what is the importance of research in community

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24 Community-Based Research: Understanding the Principles, Practices, Challenges, and Rationale

Margaret R. Boyd Bridgewater State University Bridgewater, MA, USA

• Published: 01 July 2014
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Community-based research challenges the traditional research paradigm by recognizing that complex social problems today must involve multiple stakeholders in the research process—not as subjects but as co-investigators and co-authors. It is an “orientation to inquiry” rather than a methodology and reflects a transdisciplinary paradigm by including academics from many different disciplines, community members, activists, and often students in all stages of the research process. Community-based research is relational research where all partners change and grow in a synergistic relationship as they work together and strategize to solve issues and problems that are defined by and meaningful to them. This chapter is an introduction to the historical roots and subdivisions within community-based research and discusses the core principles and skills useful when designing and working with community members in a collaborative, innovative, and transformative research partnership. The rationale for working within this research paradigm is discussed as well as the challenges researchers and practitioners face when conducting community-based research. As the scholarship and practice of this form of research has increased dramatically over the last twenty years, this chapter looks at both new and emerging issues as well as founding questions that continue to be debated in the contemporary discourse.

It is best to begin, I think, by reminding you, the beginning student, that the most admirable thinkers within the scholarly community you have chosen to join do not split their work from their lives. They seem to take both too seriously to allow such disassociation. — C.W. Mills, (1959 , 195)

Community-based research challenges the traditional research paradigm by recognizing that complex social problems today must involve multiple stakeholders in the research process—not as subjects but as co-investigators and co-authors. It has roots in critical pedagogy, as well as critical and feminist theory, and is research centered on social justice and community empowerment. Community-based research is not a methodology; it is an “orientation to inquiry” where researchers and community stakeholders collaborate to address community-identified problems and investigate meaningful and realistic solutions. Community-based research came out of a growing discontent among academics, researchers, and practitioners with the positivist research paradigm and instead argues that research must be “value based” not “value free.” It is relational research that fosters both individual and collective transformation. Community-based research also challenges disciplinary silos and instead fosters a transdisciplinary research paradigm.

There has been a growing interest and expectation within academia and community organizations that campus–community research partnerships provide benefits and challenges. We have seen a proliferation of research partnerships, courses, workshops and trainings on how to collaborate with community partners in community-driven research projects. There has also been a substantial increase in the literature (books and articles) describing best practices providing exemplars, and discussing methodologies. Israel, Eng, Schulz, and Parker (2005) argue that within the field of public health “researchers, practitioners, community members, and funders have increasingly recognized the importance of comprehensive and participatory approaches to research and intervention” (3).

This chapter begins with a discussion of the historical roots and theoretical background to this form of inquiry and a clarification of terminology. I include a discussion of the rationale and evaluation literature that offers convincing evidence for new and experienced researchers to consider this alternative research paradigm. Building on the work of others, I discuss seven core principles of community-based research and a list of skills often useful in the practice of engaged scholarship. This chapter argues that, as community-based research continues to grow, it is important that our scholarship includes exemplars, reflection, evaluation, and a critical discussion of best practices. This chapter hopes to contribute to this discourse.

I cannot think for others or without others, nor can others think for me. Even if the peoples thinking is superstitious or naïve, it is only as they rethink their assumptions in action that they can change. Producing and acting upon their own ideas—not consuming those of others. — Freire, 1970 , 108

The epistemology of community-based research can be traced back to many roots—Karl Marx, John Dewey, Paulo Freire, C.W. Mills, Thomas Kuhn, and Jane Addams to name but a few. Community-based research as it is practiced today has been enriched by the diversity of thoughts, methodologies, and practices that has been its foundation. The practice and scholarship of community-based research can found in many disciplines: sociology, psychology, economics, philosophy, education, public health, anthropology, urban planning and development, and social work. Different historical traditions and academic disciplines have led to contemporary differences in the form or focus of engaged scholarship, but what has united many practitioners and scholars is a social justice mission and the desire for personal and structural transformation. Lykes and Mallona (2008) argue:

Critical pedagogy (Freire) and liberation theologies (Berryman, Boff, Gutierrez, Ruether, Cone) and liberation psychologies (Martin-Baro, Watts, and Serrano-Garcia, Moane) emerged within relatively similar historical moments characterized by widespread social upheavals including armed struggle and broad- based non-violent social movements. A belief that the poor could be producers of knowledge and lead the transformation to a new social reality. [114]

Today you can find community-based research pedagogy, practices and scholarship across disciplines and collaboration between disciplines including new areas such as medicine, native or aboriginal research, conflict studies, history, and archeology. The expansion of community-engaged scholarship as epistemology reflects an important paradigm shift towards understanding multiple ways of knowing and experiential learning as critical to good research practices.

While it is not possible to include an extensive summary of the history and development of community-based research here, a brief review is necessary to provide the context and rationale for this major epistemological paradigm shift across multiple disciplines. Wicks, Reason, and Bradbury (2008) identify the influence of critical theory, civil rights, feminist movements, liberationists, and critical race theory—“critiques of domination and marginalization” and “critical examination of issues of power, identity and agency” (19). The historical roots and scholars who, I believe, have most influenced the development of community-based research are critical pedagogy (Paulo Freire and John Dewey), critical theory (Karl Marx and C.W. Mills), the epistemology of knowledge (Thomas Kuhn), and feminist theory (Jane Addams).

While Marx is noted for his writing about the conditions of the working class in Europe and his theories of alienation and oppression under capitalism, he was also an active participant in the French Revolution. According to Hall (cited in Ozerdem and Bowd, 2010 ) Marx was not only doing research and theorizing about the working classes but actively working with the workers to educate and raise consciousness. In addition to building theory, Marx and Engels sought to radically change and improve the political, economic, and social structure of society. The need to work with those most disadvantaged to challenge institutional inequality and power relationships is reflected in the principles of community-based research today. Many academics and scholars working from a critical theoretical perspective found a synergy with the principles and practices of community-based research.

Within education, John Dewey and Paulo Freire were reformers, activists, and key figures working to challenge traditional pedagogy and positivist research practices. Both were very influential in connecting research, theory, action, and refection to social reform. John Dewey (1859–1952) questioned the relevance of much of what was considered “education” by asking, “How many found what they did learn so foreign to the situations of life outside the school as to give them no power or control over the latter” (cited in Noll, 2010 , 8). Dewey saw educational institutions as agencies of social reform and social change through providing opportunities for learning and engagement with the world beyond the classroom. Summarizing Dewey, Peterson (2009) wrote:

Dewey believed that learning is a wholehearted affair; that is, you can’t sever knowing and doing, and with cycles of action and reflection, one’s greatest learning occurs. Dewey was interested in the learning that resulted from the mutual exchange between people and their environment. [542]

Dewey argued that learning—action and reflection—must take place in commune with one’s environment. Learning is co-created rather than unidirectional; a challenge to the traditional view of knowledge transfer from teacher to learner. Co-education and co-learning are key principles of community-based research.

Paulo Freire (1921–1997), the founder of critical pedagogy, also challenged conventional educational pedagogy and traditional research paradigms and saw education’s potential as liberation from oppression. His most famous and widely distributed book, Pedagogy of the Oppressed (1970) , was a call to action for both teacher and student to work together for social change and social reform. Freire saw learning as a two-way process involving “conscientization”—critical analysis and reflection leading to action. It is only through theory and practice, action and reflection, that real social change is possible. He also saw that the poor and oppressed can and must be leaders of their own liberation. Freire’s work—in challenging pedagogy and demanding researchers and academics to work with and learn from those most oppressed—has greatly influenced the practice of community-based research today.

Sociologist C.W. Mills also influenced critical pedagogy and engaged scholarship. In his classic work The Sociological Imagination (1959) he wrote:

An educator must begin with what interests the individual most deeply, even if it seems altogether trivial and cheap. He must proceed in such a way and with such materials as to enable the student to gain increasingly rational insight into these concerns, and into others he will acquire in the process of his education.... [187], We are trying to make the society more democratic. [189]

Similar to Freire, Mills challenged the social sciences to educate and through experiential education to foster democratic citizenry. Mills saw the connection between personal troubles and public issues and the role of sociology in helping others see the larger structures in society and how they reinforced inequality.

Another scholar who had a major influence on the development of community-based research is Thomas Kuhn in his classic book The Structure of Scientific Revolutions (1996). Kuhn’s work regarding the theory of the subjective nature of knowledge raised epistemological questions of “how we know what we know” and “what it is that we value as knowledge” (Wicks, Reason, & Bradbury, 2008 ). This became critically important in the development of engaged scholarship as academics and researchers began to respect and validate local knowledge, expertise, and other ways of thinking as equal to the knowledge and skills they could offer. Kuhn’s work led to questions about the privileged position of the researcher and how this privilege has denied or denigrated the experiential knowledge and understandings of oppressed groups.

It is also important to note the influence of feminist theory, in particular Jane Addams, on the development of community-based research and scholarship. Addams (1860–1935), a social activist and sociologist, played a key role in the development of engaged scholarship and community research. Naples (1996) writes that feminists argued for “a methodology designed to break the false separation between the subject of the research and the researcher” (160). Addams employed hundreds of women to go into their communities to interview, observe, and understand the experiences of other immigrant women in Chicago early in the twentieth century.

Addams also saw the need to make research relevant to the communities in which it originated. Much of the data gathered in Chicago was published as Hull House Maps and Papers (1895) and was for the benefit of the community, not for an academic audience. Her focus was social justice and social change, not theoretical conceptualizations of urban poverty. In writing about Jane Addams and the Chicago School, Deegan (1990) stated that Addams wrote “all the book’s royalties would be waived as we have little thought about the financial gain” (57). Deegan goes on to argue that Addams’ interests were in “empowering the community, the laborer, the elderly and youth, women and immigrants” (255). Addams, similar to Dewey and later Freire, was also very critical of traditional education, which reproduced inequality. Deegan (1990) writes that Addams articulated a goal of “generating reflective adults” (283).

Definitions, Terminology, and Subdivisions

We have exemplars of the methods of participatory research and canons for their practice, even if we cannot as yet agree on a single name. — Couto (2003 , 69)

Clarification of terminology is necessary before beginning a discussion of the principles and skills of community-based research,. Broadly defined, campus–community research collaboration can be referred to as community-based research (CBR), community-based participatory research (CBPR), collaborative research, engaged scholarship, participatory research (PR), participatory action research (PAR), action research (AR), aboriginal community research, popular education, participatory rural appraisal, public scholarship, university–community research collaboration, co-inquiry, and synergistic research. New terms and subdivisions continue to emerge. Strand, Marullo, Cutforth, Stoecker, and Donohue (2003a) suggest that practitioners of CBR come “from within and outside academia and work in areas throughout the world—all of which makes any commonly-accepted definition problematic” (6).

It is not my intent here to minimize or ignore the different historical roots or traditions reflected in the above forms of campus-community research, but a discussion of the distinct nature of each is beyond the scope of this chapter. Acknowledging that there are differences, this chapter will focus on commonalities and core principles that can apply broadly to campus—community research partnerships. Generally, the term “community-based research,” or CBR, is used here, although I have tried to include the terms used by authors when describing their own research. Other scholars have also focused on similarities rather than differences. Atalay (2010) suggests that, “regardless of the terminology used, the central tents remain the same” (419). CBR aims to connect academic researchers with individuals, groups, and community organizations to collaborate on a research project to solve community-identified and community-defined problems. CBR is intended to educate, empower, and transform at the individual, community, and structural level to challenge inequality and oppression.

While using a broad brush to be inclusive of all campus–community research partnerships, it is important to address what I see as two important differences in the goals and outcomes within CBR. For many practitioners, the ideal is a long-term, collaborative, and egalitarian partnership that builds community, fosters transformation, and promotes social change. Academics conduct research with and for the community, and all participants teach and learn in a synergistic relationship. Clayton, Bringle, Senor, Huq, and Morrison (2010) argue that campus–community relationships can be short term (transactional) or, ideally, a partnership in which both parties grow and change because of a deeper and more sustained (transformative) relationship.

For others, (e.g., McNaughton & Rock, 2004 ; Nygreen, 2009 –2010) the relationship between academic researchers, the university, and the community is always contentious, and power is rarely equal. For this reason, some CBR practitioners advocate community members learn the skills and knowledge necessary to conduct their own research within their communities. Nyden, Figbert, Shibley, and Burrows (1997) write, “Participatory Action Research aims at empowering the community by giving it the tools to do its own research and not to be beholden to universities or university professors to complete the work” (17). Academic researchers within this tradition are looking to empower local communities to be researchers and authors of their own transformation. The goal is to foster self-determination and self-reliance of the disenfranchised and powerless so they can be self-sufficient ( Park, 1993 ).

From this perspective, a long-term or sustained partnership with academic researchers could be seen as exploitive and disempowering.

Another major difference is that. for many, the goal of CBR includes pedagogy ( Strand, 2000 ). CBR provides an opportunity to involve students in a research project with community partners, often as part of their curriculum requirement. Strand, Marullo, Cutforth, Stoecker, and Donohue (2003b , xxi) suggest CBR is a way to “unite the three traditional academic missions of teaching, research and service in innovative ways.” CBR as pedagogy can bring students together with faculty and community partners to address community problems, as well as learn valuable skills regarding democratic research processes, communication, and civic responsibility. Porpora (1999 , 121) considers CBR “the highest state of service learning” and important as a way to promote engaged citizenship among students. There is an extensive body of research discussing the benefits, challenges, and practice of CBR as pedagogy that has generally found substantial benefits to students.

What is meant by “community” within the term community-based research requires some clarification. Alinsky (1971 , 120) noted that “in a highly mobile, urbanized society the word ‘community’ means community of interest, not geographic location.” This suggests a collective identity with shared goals, issues, or problems, or a shared fate ( Israel, Eng, Schultz & Parker, 2005 ). This has been particularly evident in the growing number of international community–researcher collaborative partnerships. Pinto et al (2007) writes:

International researchers need to become members, even if from afar, of the communities that host their studies, so that they can be part of the interactions that affect social processes and people’s understanding of their behaviors and identities. These interactions may occur at physical, psycho-social and electronic levels, encompassing geographic and virtual spaces and behaviors, social and cultural trends, and psychological constructs and interpretations. [55]

Accepting that today individuals and groups can participate in numerous “communities of interest” at the local and global level, many exemplars of CBR are situated in geographically defined communities. The community, however, is rarely a unified or homogenous group. It often includes groups within groups, competing and contentious factions, and members with diverse perspectives, needs and expectations ( Atalay, 2010 ). The diversity of participants within CBR projects reflects both the strengths and the challenges of engaged scholarship and will be discussed later in this chapter.

A final clarification with regards to CBR is that it is not the same as community organizing or advocacy. CBR includes scientific investigation respecting research ethics, methodologies, and analysis. CBR practitioners and community partners are seeking knowledge and understanding through data collection and analysis. The findings will inform decisions as to community organizing, social action, or advocacy work. Fuentes (2009 –2010, 733) makes the distinction between “ community organizing ,” which usually focuses on the development and support of leaders and “ organizing community ,” which “centers on community building, collectivism, caring, mutual respect, and self-transformation.” CBR is about organizing community to create research partnerships to address inequalities. Another misconception is that CBR is a form of public service. Public service implies a one-way transfer of knowledge, expertise, and action from the campus to the community. CBR is a multi-directional process that results in shared and collaborative teaching, learning, action, reflection, and transformation.

We both know some things, neither of us knows everything. Working together, we will both know more, and we will both learn more about how to know. — Maguire (1987 37–38)

There is universal agreement that research is critical in terms of planning, implementing, and evaluating policies and programs. Nyden and Wiewel (1992 , 44) state, “research is a political resource that can be used as ammunition” to provide credible evidence regarding funding, programs, and or policy decisions. So why do CBR? For engaged scholars and activist working within a CBR paradigm, the reasons for doing so are numerous—personal and structural transformation, co-education, community empowerment, capacity building, and a belief in the need to democratize the research process. Even though engaged scholarship has not always been given the support and resources needed within academia, many argue that it is the only type of research that really makes a difference. Reason and Bradbury (2008) assert “indeed we might respond to the disdainful attitude of mainstream social scientists to our work that action research practices have changed the world in far more positive ways than conventional social science” (3). Rahman (2008) in summarizing the early work of Budd Hall in the 1970s states, “Participatory Action Research is a more scientific method of research because the full participation of the community in the research process facilitates a more accurate and authentic analysis of social reality” (51).

For many engaged scholars, ethical research requires working with and for individuals and groups, not doing research on or about subjects. Collaboration with multiple stakeholders allows for an opportunity to re-conceptualize problems and come up with innovative solutions. For many, this form of research is “more than creating knowledge; in the process it is educational, transformative and mobilization for action” ( Gaventa; 1993 ; xiv–xv). Community-based researchers acknowledge that this form of inquiry is not the only way, but often it is the best way to address the magnitude and complexity of contemporary social programs. It requires researchers across disciplines and from multiple perspectives, together with activists and community members, to join as equal partners and to think about and strategize solutions that are meaningful and beneficial to them. The benefits of combining scientific methods and lived experiences to re-conceptualize problems and find solutions are clear. Involving community stakeholders in all stages of the research process also increases the chances that solutions will be relevant and meaningful to community members. CBR is ideally situated to inform best practices as it is research generated from the ground up.

For more traditional social scientists, the reasons for considering CBR may reflect pressure from outside funders or community members. There has been a growing frustration with traditional research that the findings have not been applied or benefited the community or broader society. Nyden, Figert, Shibley, and Burrows (1997 , 3) state, “Traditional academic research has focused on furthering sociological theory and research” and not social action or social justice. Forty years ago, Fritz and Plog saw traditional research methods as no longer viable within archeology, stating:

We suspect that unless archaeologists find ways to make their research increasingly relevant to the modern world, the modern world will find itself increasingly capable of getting along without archaeologists. [ Cited in Atalay, 2010 , 419].

This concern has been raised within other disciplines and is reflected in the development of CBR and scholarship.

There are also very good reasons for institutions of higher education to align their mission to reflect a commitment to serve. Boyer (1994) suggests that the historical roots of higher education as a service to the community and a “public good” have diminished. He argues for the “New American College”—an institution that celebrates and fosters action, theory, practice, and reflection among faculty, students, and practitioners to solve the very real problems facing communities today. Colleges and universities must respond to and engage with communities to listen, learn, and work together on solutions. Netshandama (2010) describes how the University of Venda in South Africa changed over the course of four years to “align its vision and mission to the needs of the community at local, regional, national, continental and international levels” (72). Netshandama (2010) argues that the university did not just support faculty or add resources; their vision was to “integrate community engagement into the core business of the university” (72).

Methodology and a Transdisciplinary Paradigm

CBR is not a research methodology. Researchers and community members use a variety of methods to gather data about a community issue or problem and then seek solutions. It reflects a radical paradigm shift away from positivist methods of inquiry to what Leavy (2011) refers to as “a holistic, synergistic, and highly collaborative approach to research” (83). It can be best understood as a “ philosophy of inquiry ” ( Cockerill, Meyers, & Allman, 2000 ) or an “ orientation to inquiry ” ( Reason & Bradbury, 2008 ) that seeks to create participative communities of inquiry to collaborate to address community problems. Practitioners of CBR recognize and value multiple ways of knowing and do not privilege the knowledge or skills of the researcher over local experiences, skills, and methodologies. Torre and Fine (2011) suggest that PAR “represents a practice of research, a theory of method and an epistemology that values the intimate, painful and often shamed knowledge held by those who have most endured social injustice” (116). At its best, CBR reflects a democratization of the research process and a validation of multiple forms of knowledge, expertise, and methodologies. It is a shift away from research “subjects” to research collaborators and colleagues.

Although CBR is not a methodology, it does address the recent methodological questions concerning the role of “reflexivity” in research design and practice. Subramaniam (2009) states, “After adopting reflexivity as a valid research process, the researcher must make decisions about her status vis-à-vis those being researched and become conscious about their status in relation to her, the researcher” (203). This has led to further methodological questions concerning the validity of traditional binaries such as “researcher/researched,” “insider/outsider,” and “objective/subjective.” These statuses are addressed openly and critically in CBR projects. For example, critical psychologists often face an ethical dilemma when involved in CBR projects. Baumann, Rodriguez, and Parra-Cardona (2011 , 142) refer to this dilemma, citing the American Psychological Association (APA) Code of Ethics that states psychologists must refrain from “multiple and dual relationships with clients and community members.” For CBR practitioners, research is relational. Scientific “objectivity” is problematic and does not strengthen the validity of research outcomes.

CBR lends itself to mixed method design and often reflects a transdisciplinary research paradigm. According to Leavy (2011) , “Transdisciplanarity is a social justice oriented approach to research in which resources and expertise from multiple disciplines are integrated in order to holistically address a real-world issue or problem” (35). Leavy argues that “transdisciplanarity does not mean the abandonment of disciplines (34)” but rather knowledge gained through this form of inquiry transcends traditional disciplinary silos. I would agree that CBR reflects a “transdisciplanary research paradigm” and that this also includes community scholars outside academia.

Although data can result from many methods, there are core principles or tenets of CBR that are generally agreed upon by most practitioners. Scholars do disagree on the number of core principles. However, the unique nature of every CBR project allows for flexibility and differences. The principles represent guidelines or best practices, and are helpful for setting goals and for praxis,—continuous reflection, and action. They are also interconnected and interdependent. Each principle can be conceptualized along a continuum. For example, Schwartz (2010) suggests that PAR can include research that has minimal collaboration to projects that have full participation of all stakeholders in every stage of the research process with most projects falling somewhere in the middle.

Principles of Community-Based Research

Strand, Marullo, Cutforth, Stoecker, and Donohue (2003) suggested three core principles that define CBR: collaboration, democratization, and social action for social change and social justice. Atalay (2010) expands on these three and suggests five core principles of CBR: community driven, participatory, reciprocal, power sharing, and action oriented. As the number of community-based researchers, practitioners, projects, and disciplines involved has multiplied and the scholarship of CBR has increased, so have the number of core principles. Leavy (2011) suggests seven principles: collaboration; cultural sensitivity, social action and social justice; recruitment and retention; building trust and rapport; multiplicity and different knowledges, participation and empowerment; flexibility and innovation; and representation and dissemination. Still other practitioners have identified nine ( Puma, Bennett, Cutforth, & Tombari, 2009 ; Israel, Eng, Schultz, & Parker, 2005 ).

An understanding of the core principles that define CBR is important, but how each principle is negotiated and understood will reflect contextual, social, and historical differences within each project. Synthesizing and building on the work of others, I discuss seven principles of CBR that I believe represent best practices within this orientation to inquiry: collaboration, community driven, power sharing, a social action and social justice orientation, capacity building, transformative, and innovative. Summaries of CBR projects are also provided as brief case studies. They are intended to reflect the challenges and benefits of this work and how the principles of CBR are negotiated and reflected in unique ways.

Collaboration

Collaboration between the researcher and community is a fundamental principle of CBR. It is defined as working in partnership with all stakeholders to identify, understand, and solve real problems facing their community. Collaboration happens in all stages of the research process—including problem definition, methodological decisions, data collection and analysis, dissemination of the findings, and evaluation of the project. Collaboration between the researcher and the researched is a fundamental paradigm shift from the traditional scientific method. Within CBR, the distinction between the researcher and the researched is no longer valid or acceptable. This does not remove differences between stakeholders or between community members and researchers but rather recognizes and validates different ways of knowing, experiences, skills, and methods equally. Mandell (2010) states:

Ultimately, what the activist sociologist has to offer social change organizations is her or his detachment from the immersion in the work, grounding in social change theoretical perspectives and the power to ask questions and to make outside observations. The outsider perspective of an action researcher with the insider views of community partners makes for a powerful combination. [154]

To collaborate with community members it is critical that the project is transparent and inclusive of all stakeholders. It is a reflective process that continues throughout the project and is based on trust, respect, and equality between all participants. Mandell (2010) states that a “successful trust filled researcher-community partnership is built over time, through rigorous self-examination and regular communication” (154). Trust can often be fostered by researchers participating in additional community events and activities and by attending celebrations that are not directly related to the research project. Listening to and supporting participants ‘own professional and personal goals also fosters trust and builds collaboration ( Baumann, Rodriguez, & Parra-Cardona, 2011 ).

To foster collaboration, the researcher needs to understand some basic principles of group processes and group dynamics. CBR success depends on participatory democracy and open communication between members. This facilitates understanding and enables all members to share their strengths and skills, to set priorities, and to accomplish tasks. However, inclusivity and collaboration with multiple stakeholders can lead to questions about project size. Generally, large projects with multiple stakeholders can lead to hierarchies in decision making and discussion and may leave some voices silenced. Small projects with few members can lead to concerns about burnout and/or reinforcing power inequality within the community. There is no ideal size for maximum collaboration. Each project will need to negotiate and reflect upon collaboration and inclusivity in an ongoing dialogue or “multilogue” with the community. Sometimes community education about what CBR is may be necessary before collaboration is possible. This can add months or years to the expected timeline and may alter the original CBR project.

Case Study: A CBPR Project in Catalhoyuk, Turkey

Atalay (2010) was involved in an archeological excavation site in Catalhoyuk, Turkey, and wanted to include the community in a CBPR project. She stated that her first priority was to “[d]etermine if the community was interested in becoming a research partner, and what their level of commitment was. This required substantial up-front investment both to explain CBPR and to demonstrate how their role as collaborators would differ from their previous role as excavation labor or ethnographic informants” (422). In conducting interviews with local residents to invite collaboration, individuals felt they could not contribute to the research partnership until they received “archeology-based knowledge.” Atalay found that “contrary to what I had initially expected, the first several years of the project focused on community education rather than on developing and carrying out an archeology, heritage management or cultural tourism-related research design” (423).

The CBPR project started with archeology education that resulted in “an annual festival, archaeological lab-guide training for village children and young teen residents, a regular comic series (for children), and a newsletter (for adults)” (423). After some time, Atalay began moving the community towards a research partnership. The CBPR project initiated a local internship program and archeological theatre. Both were community-led and community-driven projects that fostered capacity-building and recognized the importance of local knowledge and experiences. Atalay acknowledged that the work was slow and did not take the direction she had initially intended. However, she argues that “collaborative research with communities in a participatory way offers a sustainable model, and one that enhances the way archeology will be practiced in the next century” (427).

This CBPR project illustrates that collaboration is only possible when partners are not only seen as equal by the researcher but when they experience it themselves. Freire (1970) reminds us we must always begin where the community is: “All work done for the masses must start from their needs and not from the desire of any individual, however well intentioned” (94). Atalay’s work also reflects the challenges and benefits of collaborative research partnerships. Problems and solutions are identified by the community and it is the community that is the primary beneficiary of the research project.

Community Driven

Classic social science research focused on social problems that the researcher and the academic community defined as important or worthy of study. Generally, a research project was initiated and controlled by the researcher. It was the researcher who benefited and subjects were often treated as objects. CBR was a response by engaged scholars and practitioners to end exploitive and oppressive research practices that left community problems intact, inequality unchallenged, and often community members feeling used. Ideally, community-based projects should be community driven from conception to dissemination of the findings and evaluation of the project. Comstock and Fox (1993) suggest that local communities and workplace groups should decide on the nature of the problem and participate in the investigation of local and extra-local forces sharing their lives. Collectively they may decide to take action based on the research findings.

However, Maguire (1987) suggest that “realistically, such projects are often initiated by outside researchers” (43). If many CBR projects do not originate within the community, how can practitioners and researchers foster community - driven projects? Whether the community is local or global, participants in CBR projects will often have conflicting interests, sentiments, expectations, and priorities. To be inclusive and have all stakeholders as participants in the research project means tension, conflict, and challenges are inevitable. Bowd, Ozerdem and Kassa (2010) remind us that:

Participation literature is also criticized for ‘essentializing’ the word community as a homogeneous entity where people have egalitarian interests to produce knowledge, work with partners and decide on matters of common good in undisputed manners. In reality however, communities are characterized by protracted ethnic, linguistic and professional cliques and interest groups. [6]

Engaged scholars and practitioners need practice, patience, skills, and knowledge to ensure all stakeholders are heard and encouraged to participate. Democratization of the research process requires participatory democracy within the community, and this cannot be expected or assumed.

It is also important to ask who speaks for the community. For example, community-based researchers and practitioners have been heavily criticized for not paying close attention to the exclusion of and silencing of women within many CBR projects—the continuing “androcentric paradigm” of social science research methods ( Maguire, 1987 ; Decker, 2010 ). Maguire (1987) writes, “Women are often invisible, submerged or hidden in case study reports or theoretical discussions. Gender is rendered indistinguishable by generic terms like ‘the oppressed,’ ‘the people,’ ‘the villagers,’ and ‘the community’” (48). The challenge of CBR is that often the most oppressed within the community lack any organizational structure or resources to participate in research projects. It is critical for engaged scholars and practitioners to be conscious of who is participating in, excluded from, or silenced in CBR projects and take responsibility for encouraging and supporting the most disenfranchised to participate equally. It is often the researcher or “outsider” who is best situated to see who is excluded and what must be done to rectify this.

Power Sharing

Knowledge, discussion, and reflection about power, power sharing, and power dynamics within the community are critical for successful partnerships. Engaged scholars and activists need to encourage, support, and foster a climate where all stakeholders and researchers share power. This can be difficult when researchers often have privileged statuses that can intimidate or silence community partners. For the researcher it is often difficult to cede power and control to community members who may have less formal education or training in research methods or less knowledge of the larger issue. However, Mdee (2010) address this problem in her PRA project in Tanzania and argues: “absolute equality in the process is an impossibility given imbalances in knowledge, power and resources, and it is not helpful to pretend otherwise” power sharing is necessary and fundamental to CBR partnerships. Shared decision making includes problem definition, methodological concerns, analysis and dissemination of the findings, funding and budgetary decisions, where and when to hold meetings, as well as ethical questions such as whether to pay participants. While community-based researchers and practitioners may believe in the principle of power sharing, they may be unaware of their privileged status that continues to influence and inhibit collaboration.

Case Study: Youth Empowerment at an Alternative High School

Nygreen (2009 –2010) discusses the challenges and dilemmas of a PAR project she undertook with recent graduates and current students in an alternative high school to “examine issues of social and educational inequality” (17). Nygreen found that, over the course of the two-year project, there was high turnover of student participation, several group conflicts, and although the youths said they learned a great deal, she saw little evidence of social change. Through reflection it became clearer that wanting and believing in equitable partnerships is not the same as achieving it. She found that, in working with youth on issues of social justice, understanding power dynamics was important. She said, “I insisted that we all had an equal voice in decision-making and we were all accountable to each other. In reality, though, my posture reflected a false egalitarianism that obscured and reinforced real power differences. Despite my promises that the youth could veto decisions they did not like, I was the only member of the group with absolute veto power.” (18)

Nygreen acknowledges that PAR in and of itself does not necessarily negate the problems related to power inequality. Although PAR seeks to equalize power between participants, “in practice PAR projects may quite easily reproduce and exacerbate power inequalities while obscuring these processes through a discourse of false egalitarianism (19).” She explains, “I conflated the political and ethical values of PAR with the practice and process of PAR. What I learned, instead, is that no series of methodological steps can protect a social scientist from the dilemmas of power, authorship, and scale” (28). She advocates a “de-coupling” of the method of PAR from the political and ethical values that inform it. This PAR project highlights the critical tensions she experienced between the values of PAR and the practice of PAR. Nygreen identified the dilemmas of power and privilege—including white privilege when university-based researchers work with historically oppressed communities—and reminds us that critical reflection through dialogue and the complexities of power relations must be understood.

Although much of the research concerning power within CBR projects has focused on the imbalance between the researcher and the community, we must understand the multifaceted and fluid nature of power as it is negotiated and experienced within communities. Bowd, Ozerdem, and Kassa (2010) suggest that “participation literature seems to be infested with binary models of power such as the urban elite and the rural poor, the uppers and lowers, the north and the south, academics and practitioners. Power relationships, however, are fluid and do not usually fall into such rigidly stated categories” (6). Participation within CBR projects can reflect local hierarchies, and therefore “empowering” the community may reinforce inequality. Bowd, Ozerdem, and Kassa (2010) state, “Whilst the theoretical basis for these approaches may be well intentioned, in practice participation is not an emancipatory exercise for many due to the fact power dynamics within societies and communities are not accurately and comprehensively understood by those who instigate the use of such approaches. Thus local knowledge is a construct of the powerful” (15). CBR practitioners and engaged scholars must better understand power and how it gets used and negotiated within the community and within the research partnership. This demands reflexivity, a willingness to cede power, and an ability to recognize and challenge powerful community individuals and groups. Capacity building is one way to begin to empower those most disadvantaged and silenced by building skills and knowledge at both the individual and community level.

Capacity Building

CBR practitioners seek to build capacity within the communities they work with. This means that the researcher and practitioner organize, facilitate, motivate, train, educate, and foster community members, groups, and organizations to become architects, leaders, and authors of their own histories. The principle of capacity building requires that researchers not only “do no harm” but that they also leave communities empowered and strengthened as a result of the research project. Participants co-learn research and advocacy skills, communication and group working skills, and about participatory democracy. The skills and knowledge learned can be transferred and applied to other projects or personal experiences. Capacity building extends the goals of CBR beyond the immediate project to the future. In doing this, community-based researchers recognize local knowledge, skills, expertise, and resources and help participants see these strengths within their community.

Social Change and Social Justice Orientation

The commitment to social change and social justice work within CBR projects is often multidimensional and multilayered; there is an expectation that participation in the project will lead to personal transformation, community empowerment, and macro-structural changes. Involving those most affected by issues and problems within their own communities in the research process is an act of social justice. Collaboration and power sharing within the research process is empowering. Fiorilla et al. (2009) summarize the experiences participants shared as a result of their involvement in a CBR project involving students and women who were experiencing homelessness.

The students report how growth and change in the relationship is accompanied by listening with warmth, and empathy, and genuineness. For Dawn and Laura, however, this is not enough. The research process for them must move beyond this to having their experiences and expertise acknowledged and applied to action, action aimed at developing solutions for the problems they see as meaningful in their lives and others within their community for whom they give voice. The student researchers also underlie the power of sharing stories as they begin to connect as co-researchers, co-creators and, as they articulate, most importantly, as women. [9]

It is important to acknowledge that CBR has primarily but not exclusively focused on empowering disenfranchised individuals and communities. Partners can cut across social categories—which can lead to both benefits and challenges for all participants. While CBR practitioners may see possibilities for change as a result of the research gathered, it is critical that the decision as to what will happen as a result of the findings rests with the community. Even if the decision is taken not to act, the expectation is that personal transformation and lasting benefits to the community are likely.

Transformative

Clayton, Bringle, Senor, Huq, and Morrison (2010) contend that “the terms ‘relationships’ and ‘partnerships’ are not interchangeable” (5). They argue that relationships are interactions between individuals and can be short in duration and transactional whereas partnerships are transformational and characterized by “relationships wherein both persons grow and change because of deeper and more sustainable commitments” (7).

Case Study: Exploring “Voice” and “Knowledge” With People Living in Poverty

Krumer-Nevo (2009) argues that, in the first decades of the state of Israel, poverty was denied as it did not resonate with the dominant Zionist social democratic ideology. Until the beginning of the twenty-first century, poverty was presented as “a temporary problem for new immigrants” (283). Krumer-Nevo writes that the “voices, the knowledge and the actual presence of people who live in poverty are absent from the public debate” (284). This PAR project was designed to give those living in poverty a “voice” equal to academics, policymakers, social practitioners, and social activists to change attitudes about the poor. Krumer-Nevo used her “privileged” status to raise the idea of creating a PAR partnership between four ethnic groups who had little contact or trust of the other.

What was particularly interesting is that Krumer-Nevo realized as the project continued that a lack of voice was not the problem. She explained, “Most of the participants were eager to take part in the initiative, wanting their voices and knowledge to be heard by powerful people” (287). They were willing to share their personal experiences and knowledge as well as articulate what needs to change. Krumer-Nevo states, “The lesson we learned was that the real challenge was not the ‘empowering’ of people in poverty, since they were eager to participate in the public debate, but the fashioning of the discourse to become not merely formally inclusive but truly and deeply so” (292).

Krumer-Nevo found that giving voice to those who live in poverty is not enough. What must also happen is transformation—a multidirectional exchange of ideas, experiences, knowledge, and understanding where all stakeholders grow and where change happens as a result of the partnership.

A final core principle of CBR is innovation: multidisciplinary groups including academics, practitioners, and community members are better able to think creatively and strategize how to research complex issues and problems. Morisky, Marlow, Tiglao, Lyu, Vissman, and Rhodes (2010) describe their use of “a CBPR framework in which the collective knowledge, perspectives, experiences, and resources of these diverse partners, representing a broad spectrum of community stakeholders, helped guide the development, implementation, and evaluation of the interventions designed to reduce HIV risk among female bar workers (FBWs)” (372). Previous intervention strategies had not been successful in reducing HIV risk within this population. Morisky, Marlow, Tigloa, Lyu, Vissman, and Rhodes (2010 , 381) argue that it was this innovative CBPR project that provided new ideas for intervention with this vulnerable group of women. They state:

We used a CBPR approach that included community members, organizational representatives, and academic researchers to design, implement, and evaluate the interventions. It seems clear that this type of partnership approach to research yielded interventions that were culturally congruent and highly acceptable to a broad spectrum of stakeholders, including: FBWs, establishment managers, floor supervisors, and customers. Coupled with their being informed by sound science and established health behavior theory, the developed interventions were as “informed” as possible. The approach also ensured that data collection methodologies were realistic to yield more valid and reliable data. [381]

Sessa and Ricci (2010) discussed their innovative PAR project involving scientists, citizens, and policymakers aimed at addressing what they see is a lack of “evidence-based policy-making and improve the science-policy interface” (50). Sessa and Ricci suggest that while the applied researcher acknowledges that the “legitimate” result of their research is to help policymakers make sound decisions that benefit individuals and communities, often there is a “lack of transfer” (5) of the research findings. They argue that the way to improve this transfer of research outcomes to policymakers is to involve a third party—citizens and stakeholders affected by the research. Research that involves all stakeholders is more likely to find solutions that are meaningful and applicable to the lives of those most affected by the data ( Goh et al. 2009 ).

Skills and Practice of CBR

To conduct CBR requires skills that are often not taught in traditional social science programs or research institutes. CBR requires a major paradigm shift in the way we think about research—what we research, why we do it, and when and how we do it. This paradigm shift requires community-based researchers to learn and practice new skills. Additional skills can include community organizing, group work skills, and relational skills. A preliminary list of skills useful for CBR is as follows:

Research skills —Knowledge of research methods, practices, and analysis are necessary for good CBR work. Methods can include quantitative, qualitative, and mixed-methods design. The research may involve random sampling, case studies, historical data, and art-based research. Decker, Hemmerling, & Lankoande (2010) reviewed twelve completed CBPR health intervention projects and found that studies with the strongest outcomes had higher-quality research designs.

Communication skills —In partnering with communities and fostering their participation, it is critical that the researcher is able to communicate with and listen to all stakeholders and be able to foster communication between and within the community. Communication skills include written, oral, observational, and listening skills.

Relational Skills —The community is often weary of outsiders and mistrust academic or external researchers coming in to their communities, so forming and building relationships can take time. CBR is relational research yet researchers often do not get training in “how” to build relationships with community members. Trust, respect, care, humility, deference, and honesty are all skills and behaviors that can foster partnership and collaboration.

Reflexivity —Reflexivity is the awareness of and an analysis of self. It is being aware of who we are and how our behaviors, attitudes, values, and experiences influence how we think and behave with others. Without reflection there can be no action that is meaningful. Naples (1996 , 169) states, “Who we are personally affects how we go about our work. Whether we want to own that or not, whether we are self-conscious about this fact or not our standpoint shapes the way we proceed to gather information and draw conclusions from that information.” We must practice self-reflection and self- awareness and model it in our work. Community-based researchers recognize “a self-reflective, engaged and self-critical role” ( Israel, Schulz, Parker, & Becker, 1998 ; 181) is necessary.

Facilitation skills — Begun, Berger, Otto-Salaj, and Rose(2010 ; 560) suggest that for successful partnership “there is a need for all partners to successfully integrate their different backgrounds, expertise, values, and priorities” (52). They acknowledge that, while CBR requires the full and active participation of the community, there are often barriers to participation. These can include time, financial restraints, language, culture, feelings of intimidation, and burnout. The CBR practitioners must minimize barriers and facilitate participatory democracy.

Organizational and group work skills —Knowledge and skills related to group work and group processes is helpful for anyone working with community groups and organizations. There is extensive literature discussing group work skills, practices, and community organizing strategies that is helpful to know and understand. (See for example Staples, 2004 ).

  Motivational skills —Motivating community participants to engage in CBR projects can be difficult. Community members are often overstretched in terms of work and family commitments and/or they can be frustrated from previous research in their communities that provided few if any benefits. Motivation may also wane if community members leave or reduce their involvement and commitment for any number of reasons. The pace of CBR work can also be slow, and this too may require effort to keep participants engaged and involved.

Cultural competency —Working in communities with diverse individuals and groups requires an awareness of and sensitivity to differences in language, ethnicity, race, social class, gender, sexual orientation, and other statuses. There is a large body of research that addresses cultural competency that cannot be addressed here but it is important to know, understand, and reflect on one’s own, often privileged statuses as well as the cultural similarities and differences within and between our partners. Cultural awareness and competency is critical if CBR is to be inclusive, collaborative, and transformative. When involved in an international collaborative research project that takes place in a foreign country, the researcher must do intensive preparation work. Pinto (2000) suggests the researcher “start by studying the language, history, geography, social structures and politics of that country and of the specific community he or she proposes to study” (55).

Capacity-building skills —Capacity building skills include educating, supporting, mentoring, and acknowledging the experiences and different ways of knowing of all stakeholders. Engaged scholars foster co-learning, understanding, and application of all the skills listed above so that community partners can use them in multiple ways in the future.

Entering the Field

Anyone new to a CBR paradigm begins by asking, “How do I start?” Recognizing that campus–community partnerships ideally should be initiated by community members, researchers often begin the process of establishing a collaborative research partnership. There are many ways that researchers can “enter the field.” Naples (1996) suggests:

Some activist researchers search for a community-based site through which they might assist in the political agendas defined by community members. A second avenue develops when a group, community, or organization seeks outside assistance to generate research for social change. Another avenue to activist researchers occurs when we enter “the field” as participants who are personally affected by the issues that is the focus of our work. Many of us who choose to use our personal and community-based struggles as sites for activist research did not begin the work with a research agenda in mind.” (96)

Wallerstein, Duran, Minkler, & Foley (2005) confirm that it is always easier to form a research partnership with a community in which you have previous positive connections. If a connection has not been made, it is difficult and time consuming to build trust and foster a participatory and collaborative research partnership.

Building Trust

Researchers must gain knowledge of the community: individuals, groups, organizations, services, and the issues and concerns of residents. This can be through key informants, reports, census data, flyers, organizations, service providers, and spending time in the community and with community members. If the partnership is initiated by the researcher, one of the first tasks is to consider who is affected by or concerned about this problem. Netshandama (2010) acknowledges that identifying community stakeholders is not an easy task and suggests that the safest way of identifying community stakeholders is to pinpoint the most obvious participants without ruling out any groups and to make the process of selection open and transparent. Polanyi and Cockburn (2003) also identify that the initial stages of the CBR project can lead to some confusion and frustration as to the goals of the project. At the beginning of their CBR project with injured workers, some members were interested in research, but others felt they already had enough information and wanted to take action. Clarification and agreement to form a community-based research partnership is important; the distinction needs to be made between CBR, community organizing, and social action.

Questions for Consideration and Reflection

When beginning a CBR project, it can be helpful to think about questions and issues other practitioners have identified as important. A list of guiding questions is provided here for consideration, dialogue, negotiation, and reflection when beginning and throughout a CBR project (adapted from Mandell, 2010 , 153):

Is the CBR project transparent and inclusive of all stakeholders?

Do the researcher and community partners orient themselves within the same fundamental paradigm of social justice and social change?

Is there general agreement as to the nature of the social problem(s) and the range of possible solutions?

What is the scope of the research project including the research question(s), the methodologies, and the timeline for data collection, analysis, and final reporting? How will the findings be disseminated?

Have research ethics been addressed, including informed consent and confidentiality?

Have expectations, roles, responsibilities, and power sharing been discussed. Is there a sense of trust between partners?

Will there be collaboration at each stage of the project, including dissemination of the findings and co-authorship of any reports or journal articles?

In what ways will all stakeholders and the community benefit from participating in this research project?

Funding and Resources

Before beginning a CBR project, funding, resources, and budgets may be discussed. There are always benefits and challenges to receiving outside funding or grants. To participate in a CBR project takes time, money, and resources, and the scale of this will depend on the size of the project and what is already available from the campus or community. Projects can falter with little outside funding or resources. Resources can be administrative, including computers, meeting and office space, printing flyers and advertising materials, and research guides. Help with transportation may also be necessary to include all stakeholders. Resources can also include staffing; administrative help, and/or a project coordinator. A translator or cultural broker may also be necessary if one is working with individuals and groups from different cultural backgrounds. Polanyi and Cockburn (2003) state that the outside funding they received allowed them to “hire a (part-time) project coordinator, cover expenses for conferences and meetings with injured workers, and provide injured workers with an honorarium for their participation” (21). However, outside funders may require explicit details regarding the sample, research methods, and questions to be asked and the objectives and expected outcomes. This may leave little flexibility that most CBR projects require. Outside funders may also want a “principal investigator,” usually affiliated with an academic institution or agency, to be accountable for budgets, data collection and analysis, and the final report. Academic institutions and funding bodies may be supportive of collaborative research projects but still find it difficult to agree to collective decision making and shared responsibilities.

Flicker, Wilson, Travers, et al. (2009) developed a survey to investigate use and effectiveness of CBR, specifically looking at facilitating and barriers to CBR work with AIDS service organizations (ASOs) in Ontario, Canada. They found that increased funding was critical to facilitating CBR and that “lack of funding and resources (space, computers, time and staff)” and “too many competing demands” were the greatest barriers. The qualitative interviews with community organization staff also found:

The interviews revealed that issues surrounding funding are complex. Agencies were frustrated about how rare it was for community-based organizations to get compensated for their investment and contribution to partnered research endeavors. As such, the issue was not simply about increasing funding but also relocating and reconfiguring budgeting practices so that ASOs could (1) be the direct recipients of research grants and/or (2) increase their internal capacities to conduct research and maintain an active research programs. ( 95)

When decisions about resources are not shared, any intent to foster power sharing can reflect a “false egalitarianism” ( Nygreen, 2009 –2010) and generate mistrust. There is a need to educate funding organizations around issues of democratic decision making, collective responsibility, and capacity building.

Emerging Issues Research Ethics and Professional Boundaries:

Community-based researchers are similar to ethnographers: they need to “get up close and personal” to gain trust and establish a collaborative partnership. As we get to know our partners, questions and concerns can surface about professional boundaries. When is it appropriate to advocate or provide services to community members or to intervene into their personal lives? When does the CBR project end—after dissemination of the findings and the final report is completed or should community-based researchers continue their work into advocacy? How should we navigate our multiple roles, responsibilities, and relationships with our community partners to build trust, respect professional ethics and not exploit our partners? In reviewing the APA Code of Ethics, Baumann, Rodrilguez, & Parra-Cardona (2011) discuss the difficulties CBR practitioners have in negotiating their professional responsibilities. They state, “Establishing multiple and dual relationships with clients and community members carries the risk of becoming harmful and exploitive” (142). The APA Code of Ethics recommends “detached objectivity,” but CBR is about building trust and relationships.

There are also questions regarding the balance between scientific rigor and community needs. Baumann, Rodrilguez, & Parra-Cardona (2011) ask:

How can we balance science and community support? If methodology is changed based on community needs what are the implications to the validity of the methods? To the validity of the findings? (144–145)

The balance between scientific methods and community needs may be challenged at all stages of the research process—for example when community partners are eager to get the voices of certain community members yet random sampling is possible. Researchers may also find that their care and concern for their community partners makes scientific rigor sometimes difficult to uphold. For example, Schwartz (2010) asked students and community participants for their feedback on CBPR partnerships they were involved with and found that problems with communication and issues of power and control surfaced between partners, students, and the instructors. Students identified that they sometimes “felt pressure from their agencies to produce positive results” (8).

Another concern is confidentiality. Special consideration is needed when community members are involved in collecting data from their own communities that may be sensitive or stigmatizing. Smikowski, Dewane, Johnson, Brems, Bruss, & Roberts (2009 , 462) suggest caution:

Given the unique challenges presented in community—researcher partnerships, additional ethical issues arise that often put the researcher in conflict with more traditional research ethics. For example, when community members share in all aspects of the study, there may be difficulties maintaining confidentiality, or a heightened burden for participants with stigmatizing illnesses. [462]

This may require additional training and education regarding research ethics. While this training may extend the timeline for data collection, it builds capacity for future community-initiated research projects. Another dilemma that can arise is the pressure to collect data that fits with stakeholders’ experiences and/or expectations.

Collaboration or Exploitation

There needs to be a continuing discussion of the role of academia and power sharing within CBR partnerships. Can we have long-term and sustained partnerships between academics and community partners without them being exploitive or oppressive? Jackson and Kassam (1998) argue that participatory research programs have been “much criticized for becoming a new form of colonialism whereby western perspectives and priorities are imposed on oppressed groups” (cited in Ledwith & Springett 2010 ; 94). In discussing a PR project in Kyrgyzstan investigating health concerns, Jackson and Kassam discuss what they found: “Observations I made on a recent visit there indicate that the approach has had a substantial impact on the development of skills within rural communities. However, as the process has developed, agencies and government departments and the medical profession with their own agendas have tried to coerce communities into addressing needs that reflect their interests or perceptions” (cited in Ledwith & Springett 2010 ; 96).

Any discussion of power must include questions about “voice” and whose voice is heard and represented in CBR work. Community-based researchers must exercise caution when working with individuals or groups who may not represent the most oppressed or disenfranchised within the community. Working with community-based organizations or institutions can provide access to community members, but they may also function as “gatekeepers.” When we “partner up” with powerful community-based organizations, the staff may restrict access to less-powerful community residents if they are likely to challenge their position of dominance.

Case Study: A Thwarted CBR Project Concerning High School Dropout Rates and Absenteeism

In the spring of 2011, a senior staff member of a large public school department contacted our Office of Community-Based Learning to inquire about the possibilities of a CBR partnership to look into high dropout rates and absenteeism at an alternative high school. I was asked and agreed to meet with the senior coordinator of alternative education programs for the district to learn more about the alternative high school—the programs offered and the students, faculty, staff, and resources available. I was introduced to the background and history of alternative education generally and the specific history of this school. The public school department in this district was not an organization that I had partnered with before. Although many of our students had interned, volunteered, or completed student teaching at schools in the district, there had not been a connection with this particular school. The senior coordinator explained they were interested in learning from students, parents, teachers, staff, and truancy officers about why the alternative high school did not substantially reduce absenteeism and dropout rates as expected.

It was agreed that this could form the basis of a pilot study, a small CBR project with my students in an upper level sociology of education course that fall. They were interested in interviews, observations, and focus groups with multiple stakeholders involved in the research design, data collection, and analysis of the project. To get approval of this small CBR project, we needed to meet with the director of research and evaluation for the district. In meeting with the director, it was explained to us that, while it would be “interesting” to learn more about the high dropout rates and absenteeism from multiple stakeholders involved with the alternative high school, there was no “political will” to do so at this time. It was explained that the politics of public schools are complex and that the bureaucracy is extensive. He was confident that this was not the time to collect data about the successes or failure of any of their alternative education programs. He politely said we could submit a research proposal for this pilot CBR project, but we would be denied at this point in time. He could not say when might be a better time to explore this issue. It did not matter that the senior coordinator of alternative education programs had informal agreement from some parents and teachers to participate. The project ended before it even began.

This case study indicates that, while partnering with community-based organizations can provide benefits, they can also function as gatekeepers that reinforce power inequality within communities. It is necessary to continue to understand and reflect how power and privilege is negotiated, experienced, and challenged in dialogue and action. At this point, the CBR project is not being pursued.

Professional Barriers

Maguire (1987) lists difficulties often encountered by researchers doing PR work and suggests time as one of the greatest challenges for researchers and community partners. CBR can take a great deal of time—especially if one is partnering with a previously unknown organization or group. Building trust can take months or even years before collaboration and partnership are possible. Polanyi & Cockburn (2003 ; 23) in their work with injured workers also identified time commitments as extensive: “Academic participants spoke of how difficult it was to find the time needed to support this intensive process of collaborative inquiry, given heavy teaching, research, and publishing requirements.” Extensive time commitments may be necessary to build motivation and engage community members to establish a research partner. Tandon (cited in Maguire 1987 ) noted in reference to his personal assessment that most of his experience with PR had been a failure: “We simple underestimated people’s passivity” (42–43). Passivity can be experienced by both community members and faculty and can result from a number of factors, but to change this requires support—often institutional supports that are missing.

Institutional Barriers

There has been an increasing demand for academic institutions and funding bodies to facilitate CBR projects. Faculty often feel that their academic institutions do not recognize the scholarship of CBR in their tenure applications, the pedagogy of engaged scholarship, or their commitment to research and social justice work in their communities. Schwartz (2010) surveyed academics to get their feedback about CBR projects and found that faculty highlighted institutional barriers to CBR work as most problematic—time, lack of curriculum flexibility, resources, and the ethics approval process. Cancian (1996) makes the distinction between academic research and activist research and argues that to navigate both worlds of engaged scholar and academia is very difficult to do. She states:

Activist research is “for” women and other disadvantaged people and often involves close social ties and cooperation with the disadvantaged. In contrast, academic research aims at increasing knowledge about questions that are theoretically or socially significant. Academic research is primarily “for” colleagues. “It involves close ties with faculty and students and emotional detachment from the people being studied. Social researchers who do activist research and want a successful academic career thus have to bridge two conflicting social worlds.” [187] “[P]articipatory research is so strongly oriented to the community that it is difficult to maintain an academic career. It is especially difficult to produce the frequent publications required by a research university on the basis of research that faithfully follows the tenets of participatory research. [194]

Academic organizations must also recognize and support transdisciplinary research and scholarship within a CBR paradigm. Levin and Greenwood 2008 ) write, “Action Research’s democratizing agendas and necessary transdiscplinarity run right into the brick walls of academic professional silos and disciplinary control structures to preserve disciplinary power and monopolies over positions and terms of employment and promotion of their disciplines” (212). Votruba (2010) refers to this as the need to “institutionalize this work—provide campus leadership; faculty incentives and rewards; planning and budgeting; annual evaluation, awards, and recognitions; and public policy aligned to support the scholarship of engagement” (xiv).

Twenty-five years ago, Boyer (1996) argued that we should not expect institutions of higher education to lead in tackling some of the world’s greatest problems—that in fact they were part of the problem. He wrote:

[W]hat I find most disturbing... is a growing feeling in this country that higher education is, in fact, part of the problem rather than the solution. Going still further, that it’s become a private benefit, not a public good. Increasingly, the campus is being viewed as a place where students get credentialed and faculty get tenured while the overall work of the academy does not seem particularly relevant to the nation’s most pressing civic, social, economic, and moral problems. [11]

Today there has been much progress within many institutions, However, this must continue as institutional leadership is critical to expanding CBR to tackle contemporary social problems within our communities and globally. Glass and Fitzgerald (2010) have written a “Draft Recommendations for Engagement Benchmarks and Outcomes Indicator Categories” as a way to evaluate the extent to which institutions and faculty are involved and supported in campus–community partnerships. They suggest that the conceptualization of “scholars” and “scholarship” be broadened to reflect the community—creating “the community of scholars” and “community scholarship” to give full support and recognition of all partners.

CBR is difficult to evaluate in terms of assessing our successes and failures. What is a successful outcome of a CBR project? How can we assess or determine if “collaboration,” “empowerment,” or “capacity building” took place and to what extent? Peterson (2009) suggested that there is a growing body of research addressing the question of evaluation:

With the bulk of early research on community-based education focusing on the academic, civic, and moral benefits for students, many researchers in the late 1990s problematized the paltry research that had been conducted on the ways in which communities benefit or are burdened by the involvement of faculty and students in their community work. As a result, in the last 10 years a variety of studies have been conducted to assess this impact (544).

For example, in a comprehensive evaluation of published peer-reviewed articles related to the use and outcomes of CBPR in clinical health trials De Las Nueces, Hacker, DiGirolama and Hicks (2012) found CBPR projects “ had very high success rates in recruiting and retaining minority participants and achieving significant intervention effects” (1379). They also found that authors often reported community participation in detail but were less likely to discuss participant involvement in the interpretation and dissemination of the research findings.

However, evaluation research of engaged scholarship is still limited.

When projects take a very different direction than originally intended (as in Atalay, 2010 ), can it still be considered a successful CBR project? If the researcher does not see any evidence of transformation, but community members suggest they have learned a great deal (as discussed by Nygreen, 2009 –2010), is this still success? Votruba (2010) challenges us to critically look at how we determine success. He states:

We need to do a far better job of assessing our engagement work. We’ve made progress in this regard but, until we have reached agreement regarding what constitutes excellence in this domain, it will remain difficult to measure and reward. For example, should we focus on assessing activities or outcomes? What role does self-assessment play? How about peer assessment? Absent of appropriate and generally accepted standards for evaluating the scholarship of engagement, faculty members are less likely to embrace it because of the risk that it will not be recognized and rewarded. [xiii–xvi]

There are few guidelines as to how to evaluate CBR projects. As said previously, the core principles of CBR are not intended as evaluation criteria. A preliminarily question might be “who” decides on the guidelines and criteria for success? Bowl, Tully & Leahy (2010) suggest, “In reflecting views that some parties to the research would disagree with, we were vulnerable to charges of selectivity and bias. Ensuring the validity of our findings was a challenge.”( 47). They suggested an alternative way to approach validity in the research, by focusing on credibility rather than truth, stating, “Credibility entails a sense that researchers understand the field within which they research, and that they respect those with whom they research. The researchers themselves and not just their tools need to be ‘trustworthy’” (48).

As scholars and researchers working from a social justice and social change paradigm, we often reflect on whether our CBR work has made a significant difference and in what ways. Is social change an important criterion for evaluation of CBR projects? Lykes and Mallona (2008) suggest that engaged researchers and scholars have not been as successful as they might hope in making substantial, lasting change. They state, “A vast literature has emerged documenting and evaluating individual development projects and the ways in which they have or have not contributed to social change. Despite local contributions there is little evidence that the cumulative effect has either redressed social inequalities or reduced structural violence” (113). While this may be true, it suggests the need for continued reflection and action—praxis, not defeat. Small successes do matter, and the cumulative effects may still be emerging. We also need to “mainstream” CBR within academic institutions, communities, and funding bodies to increase opportunities through additional supports and resources.

There has been a huge increase in the scholarship of CBR for engaged scholars to learn from others in the field. Unfortunately, so much of the literature about CBR principles, strategies, and exemplars is written for an academic audience rather than written for community members. Couto (2003 , 71) In his review essay of Minkler and Wallerstein’s edited book Community-Based Participatory Research for Health , states, “Despite the wonderful examples of CBPR for and with community partners, we still have the challenge to develop methods that will permit community groups to conduct research of their own and by themselves. Only by striving to turn research for and with them into tools that community partners can use to do their own research will we really be pushing the cutting edge of concepts such as ‘empowerment,’ ‘community development,’ ‘community organizing,’ ‘representation,’ and ‘participation.’” Fuentes (2009 –2010) also challenges community groups not only to participate in research projects but to take ownership and control over research concerning their communities and recognize their capabilities of being both subjects and architects of research.

CBR is a collaborative research project between researchers, community members, and sometimes students to formulate problems and find solutions that are meaningful and practical for all stakeholders. It has a rich history in critical pedagogy, critical theory, feminist theory, and the epistemology of knowledge that continues to influence the principles and skills that define CBR. Today we have exemplars that help guide new practitioners in their consideration of and engagement with community partners to form a collaborative and transformative relationship. If we use subjective measures to determine “success,” we have an abundance of evidence that suggests CBR and engaged scholarship has had substantial success in finding innovative solutions to complex problems in our communities. Successful projects have occurred in disciplines such as public health, psychology, sociology, anthropology, urban development, and archeology. It has also included projects that are transdisciplinary in design and practice. Success has also been found within diverse communities of interest: children and youth, aboriginal peoples, female bar workers, HIV and AIDS clients, injured workers, and immigrant families to name just a few discussed here. Evaluation research suggests that this paradigm shift to a new “orientation to inquiry” has fostered campus-community partnerships that address the traditional inequities in the research process as a result of the positivist paradigm.

The strength of CBR and scholarship is its diversity and willingness to be transparent in addressing challenges. Practitioners and scholars of CBR continue to struggle with issues related to power and control—how power is used and experienced by the researcher, community members, and other community-based organizations. Questions continue to be raised about encouraging sustained partnerships or developing community scholars who do not need or want outside researchers from academic institutions. At this point, it seems that there is a growing awareness that academic institutions should revisit their public mission to serve, to collaborate with community partners on community-defined issues. I am not convinced that community organizations and/or community members are developing this same mission. However, if independence from academic institutions is a sign of capacity building, then “success” may result in continuously new partnerships. This may be more challenging for researchers and practitioners and warrants further consideration.

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Benefits of Community Engaged Research

Community engagement in research has enabled ACADEMIC RESEARCHERS to:

• Increase the validity within the study by improving accuracy of measurements
• Conduct research that can be implemented in partnership with the studied communities
• Design meaningful and effective community interventions that are culturally and linguistically appropriate for communities

Community engagement in research has enabled COMMUNITY ORGANIZATIONS to:

• Ask questions that are meaningful to their community members
• Develop and evaluate effective programs for their clients
• Demonstrate effectiveness of their programs for future funding opportunities
• Increase the legitimacy of their work among funders, policy-makers and other stakeholders

Principles of Community Based Participatory Research (CBPR)

One type of community engaged research is community-based participatory research (CBPR), also known as participatory action research and community-partnered participatory research.

CBPR is an approach to research that is rooted in the principles of equity, justice, and fairness and that aims to ensure that all the partners in a research project obtain what they need from the research project.

• FOCUS on public health issues relevant to the community, including those influenced be social and economic determinants
• DISSEMINATE results to all partners and identify stakeholders who can influence chance
• BUILD on strengths and expertise within the community
• FACILITATE an equitable partnership in all phases of the research that aims to both empower & share power
• RECOGNIZE the community as a unity of identity with shared experiences related to race, socioeconomic status, occupation, etc.
• FOSTER co-learning and capacity building among all partners
• COMMIT to a sustainable, and when possible, long term investment in the partnership
• INTEGRATE a balance between knowledge generation and action

Community-Engaged Research: What It Is and Why It Matters

The article “Community-Engaged Research: What It Is and Why It Matters” appears in the Winter 2022 issue of Footnotes published by the American Sociological Association

At least since the movement emerged in the early 2000s, I’ve been a proponent and practitioner of all things public sociology. I edited Contexts magazine from 2008 to 2011 with Chris Uggen, fellow sociology professor at the University of Minnesota, and together we built The Society Pages.org, host of the largest collection of sociology websites on the internet. I helped create a senior capstone course based on service-learning placements for undergraduate majors in sociology at Minnesota. I’ve written op-eds and collaborated with various advocates and organizations, policy initiatives, and media projects. When I was president of the Midwest Sociological Society in 2016, I chose the theme “Sociology and its Publics: The Next Generation” for meetings. But in recent years, the public-facing sociology I’ve found most intriguing and significant is community-engaged research (CER).

I learned most of what I know about CER while helping launch the American Sociological Association’s Sociology Action Network (SAN) and serving on its Advisory Board over the past few years. SAN is the initiative created by Council to help sociologists interested in community-based, pro bono work get connected with small, nonprofit organizations, agencies, projects, and initiatives looking for services, assistance, and support from professional sociologists. The driving idea was that large numbers of academic sociologists who have both the skills and the passion to contribute to concrete, on-the-ground efforts to address social problems and issues don’t always know how to get connected with appropriate organizations and groups, even those in their own communities who could benefit from their energy and expertise. It was almost like we needed a matchmaking service—a sociological Tinder—to help sociologists and organizations find each other. Indeed, one of SAN’s first projects was the creation of this service—thus, the “network” in our title.

In addition to our professional matchmaking work, SAN hosted special sessions at ASA’s Annual Meetings; worked to find and promote links and resources for community-based collaborations; and, thanks to the hard work of Carol Glasser of Minnesota State-Mankato, created an online resource page with links to webinars, best practices, and sample documents for those interested in doing this work. SAN also became the review panel for ASA’s long-standing Community Actions Research Initiative (CARI) grant program , which provides funding for sociologists who are collaborating with community organizations to address social problems.

I have learned a lot in the process. One of those lessons was about how many different organizations, programs, and community leaders dedicated to social problem-solving are out there in the world right now, and how much they need our assistance. Another was how difficult it is for a national professional organization to facilitate networking, connections, and the exchange of information at various local and regional levels. But much of what I’ve learned—from the sociologists I’ve met and worked with on and through my role on the SAN Advisory Board—is about community-engaged research itself, as a distinctive approach to research, knowledge-creation, and public engagement—what it is; who does it and how committed and skilled they are; and why it is such an important part of our discipline, its legacies, and its traditions. That’s what I’d like to share briefly with you here.

Definitions

Let me begin with the usual proviso that what we call “community-engaged research” can be defined in many different ways and often goes by several different names—community-based scholarship; participatory action research; research-practice partnerships; or collaborative social justice research. Some see it as a branch of applied sociology, others as its own distinct thing. But whatever we call it, this approach to research and sociology refers to initiatives that involve some kind of mutually beneficial collaboration among academic researchers and folks from outside of the academy who are collecting data, offering programs, or creating services that speak to the needs of specific communities and target populations on the ground.

The nature of these relationships and the kinds of contributions sociologists make to these collaborative projects vary widely. Engagement can range from consultation on vision and mission to data collection and needs-assessment using surveys, interviews, or focus groups. It can include advising on program design and policy development as well as conducting program evaluations and assessments. It also often involves some type of public or legislative advocacy or public communication (via op-eds, position papers, or formal reports). Community-based work spans the gamut of sociological methods and subfields, and can refer to policies, programs, and initiatives that are local and issue-specific, as well as those that are broader and more encompassing. Many sociologists who do this work operate at multiple levels and across a range of areas all at once.

Since I came to understand community-engaged scholarship in the context of public sociology, I find it useful to clarify the distinctions between the two as well. Public sociology, or publicly engaged sociology as I prefer to call it, refers to any sociological research, writing, and work happening outside of the academy. Among the characteristics and principles that distinguish community-based sociology from other forms of public scholarship are that it is oriented not only to the dissemination and application of general knowledge, but also to the construction of new knowledge, ideas, and approaches. In addition, the principles of relationship-building, reciprocity, and responsibility are far more “up front” and indeed imperative in this collaborative work than other, more standard forms of public engagement. And finally, community-based work can involve advocacy, but is not actually, or even necessarily, normative. Indeed, oftentimes participatory action research involves surprisingly basic and conventional social theories, data, and methodological approaches, albeit applied and adapted to unique cases and local contexts that help develop or improve programs that can make a difference in the lives of individuals and communities.

For what it is worth, the conception of public sociology that I have employed here is a bit broader than Michael Burawoy’s original definitions ( Hartmann 2017 ) in that it includes sociology that employs instrumental as well as reflexive (or critical) knowledge—that is, it can be policy oriented or advocacy centered, or even both. The key thing for me is not what kind of sociological research and knowledge we are talking about, and not whether its politics are oriented toward reform or more radical change, or something else—only that we are talking about any and all sociology that happens outside of the academy, which is precisely what makes community-engaged research, with all of its various manifestations and forms, so compelling.

Significance

So, why should we care about this unique branch or brand of sociology? Why should those of us who don’t do community-based research ourselves be interested in any of this? There are many reasons that come to mind, and intellectual and scholarly benefits are at the top of my list.

Sociology is a discipline in need of constant reinvention and renewal. Working with concrete, community-based initiatives, organizations, and advocates provides academic sociologists with opportunities to put our theories and methods to the test—to assess how they vary in different contexts and conditions, to observe new developments in the world, and to identify underlying mechanisms and multiple modes of understanding and engaging the world. Community-engaged work helps us understand the applications and implications of our knowledge, and even develop new knowledge and theories about the social world. Even more, community-engaged work provides real-world, empirical cases from which to reflect seriously on some of the biggest and most fundamental questions of the discipline and on knowledge construction more generally: How is knowledge produced? Who produces it? How is it used? And who benefits—or doesn’t?

Working with concrete, community-based initiatives, organizations, and advocates provides academic sociologists with opportunities to put our theories and methods to the test

Community-engaged research requires us to grapple with these matters of epistemology and ontology. It forces us into needed reflection on the complexities of objectivity, positionality, and reflexivity, the constructedness of science, and the contextuality and utility of knowledge. Research that is fundamentally embedded in, and engaged with, communities also helps us to see how sociology can be complicit with power and privilege, as well as a source of social progress and change.

Framed as such, it is important to emphasize how many of the time-honored, ivory tower assumptions and conceits about our own work—our status as intellectuals and researchers and our role in the world—can be turned on their head by community-engaged research. In collaborating and coordinating with others, we realize that much of the work is not so much what we have to give (or “dole out”) to them, but rather how much we don’t know—that is, how much we sociologists have to learn from those doing the work of society right there on the ground, every day, without fanfare, recognition, or great reward.

There are practical and professional considerations here as well. CER is especially attractive to many graduate students in our discipline. For some sociology graduate students, community-based research provides a way to get started on research that can be personally rewarding, as well as lead to theses, dissertations, or other, longer-term projects. For others, it provides numerous and immediate opportunities for making good on their visions of using sociological theory and research to help solve social problems or address injustices—the very reasons many came to our field in the first place. Still other graduate students, when faced with the uncertainties of the job market and the changing nature of work in higher education, simply see better, more meaningful professional prospects in this work than elsewhere.

And it isn’t just graduate students. A large and increasingly diverse number of scholars in our field also care about this kind of work and do it regularly, even primarily. These are our colleagues, classmates, and students, our friends, and potential collaborators and coauthors. And there are more community-based researchers than those of us at elite doctoral universities with very high research activity may realize. This was one lesson I learned and a dominant theme during my time in the leadership at the Midwest Sociological Society. Action-oriented, community-based research was perhaps the most common and most meaningful kind of scholarship in which many of my colleagues at regional universities, liberal arts institutions, and community colleges were engaged. These are academic sociologists who do a lot of teaching yet are also committed to both scholarly research and giving back to their communities. In a world where time and energy are limited, community-engaged work provides an avenue to make good on all the goals, demands, and rewards of being an academic—organically and simultaneously.

Many questions about community-engaged sociology remain ahead:

• What resources or support should ASA be developing and providing to our members interested in doing community-based work?
• Do we need new outlets or venues, or even a journal, to better support, promote, and coordinate this work and sociologists doing this kind of work—and ultimately to bring that work closer to the center of the discipline?
• What kinds of course work and resources are necessary to train graduate students to do this work?
• How do we properly recognize and reward this work in our discipline and in the academy more generally when it comes to things like hiring, tenure and promotion, and merit?

Some of these questions will be addressed by other articles in this issue of Footnotes ; others will remain unanswered for now. But there is no doubt in my mind that how we answer these questions—and the extent to which we support and facilitate and understand community-based research—is a crucial task for our discipline and its future.

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Understanding community-based participatory research through a social movement framework: a case study of the Kahnawake Schools Diabetes Prevention Project

• Marie-Claude Tremblay   ORCID: orcid.org/0000-0002-4965-2515 1 ,
• Debbie H. Martin 2 ,
• Alex M. McComber 3 , 4 ,
• Amelia McGregor 3 &
• Ann C. Macaulay 4  

BMC Public Health volume  18 , Article number:  487 ( 2018 ) Cite this article

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A longstanding challenge of community-based participatory research (CBPR) has been to anchor evaluation and practice in a relevant theoretical framework of community change, which articulates specific and concrete evaluative benchmarks. Social movement theories provide a broad range of theoretical tools to understand and facilitate social change processes, such as those involved in CBPR. Social movement theories have the potential to provide a coherent representation of how mobilization and collective action is gradually developed and leads to systemic change in the context of CBPR. The current study builds on a social movement perspective to assess the processes and intermediate outcomes of a longstanding health promotion CBPR project with an Indigenous community, the Kahnawake Schools Diabetes Prevention Project (KDSPP).

This research uses a case study design layered on a movement-building evaluation framework, which allows progress to be tracked over time. Data collection strategies included document (scientific and organizational) review ( n  = 51) and talking circles with four important community stakeholder groups ( n  = 24).

Findings provide an innovative and chronological perspective of the evolution of KSDPP as seen through a social movement lens, and identify intermediate outcomes associated with different dimensions of movement building achieved by the project over time (mobilization, leadership, vision and frames, alliance and partnerships, as well as advocacy and action strategies). It also points to areas of improvement for KSDPP in building its potential for action.

While this study’s results are directly relevant and applicable to the local context of KSDPP, they also highlight useful lessons and conclusions for the planning and evaluation of other long-standing and sustainable CBPR initiatives. The conceptual framework provides meaningful benchmarks to track evidence of progress in the context of CBPR. Findings from the study offer new ways of thinking about the evaluation of CBPR projects and their progress by drawing on frameworks that guide other forms of collective action.

Peer Review reports

Community-based participatory research (CBPR) is an approach to research that involves collective, reflective and systematic inquiry in which researchers and community stakeholders engage as equal partners in all steps of the research process with the goals of educating, improving practice or bringing about social change [ 1 , 2 , 3 ]. At its core, CBPR questions the power relationships that are inherently embedded in Western knowledge production, advocates for power to be shared between the researcher and the researched, acknowledges the legitimacy of experiential knowledge, and focuses on research aimed at improving situations and practices [ 3 ]. This approach to research is recognized as particularly useful when working with populations that experience marginalization – as is the case for some Indigenous communities—because it supports the establishment of respectful relationships with these groups, and the sharing of control over individual and group health and social conditions [ 3 , 4 ].

A longstanding challenge of CBPR has been to anchor evaluation and practice in a relevant and comprehensive theoretical framework of community change [ 4 , 5 , 6 , 7 , 8 ]. Given the complex causal web linking CBPR projects to specific health outcomes, traditional measurement strategies may neither be sensitive enough nor adequate to assess change and document successes or failure at the community level [ 6 , 9 , 10 ]. In addition, our understanding of the processes that link community-based collaborative action to changes in systemic determinants of health outcomes is still limited [ 6 , 8 ]. To date, most evaluative frameworks of CBPR have focused on the internal characteristics of coalitions and partnerships [ 7 , 11 ], provided general guidance on implementation steps [ 8 , 12 ] or used logic models to map out desired outcome categories [ 13 ]. There is a need to articulate specific, concrete and sequential evaluation benchmarks for CBPR in a detailed and theoretically consistent framework [ 6 ].

Social movements, generally viewed as large group actions that promote social change [ 14 , 15 ], share a set of common features with CBPR, such as aiming to reverse unequal relations of power by creating broad social, policy and systemic changes [ 4 , 16 , 17 ]. The field of social movement research has produced a vast array of theoretical approaches, providing substantial theoretical tools to understand and facilitate collective action and social change [ 14 , 15 , 18 , 19 , 20 , 21 ]. While many fields of research and action aimed at social betterment have been inspired by social movements [ 10 , 22 , 23 ], to our knowledge social movement theories have never been explicitly used to inform and better understand CBPR processes. We believe these theories can provide a coherent representation of how mobilization and collective action is gradually developed and leads to systemic change in the context of CBPR.

As a first step in assessing the relevance of social movement theories to understanding CBPR, we conducted a framework synthesis of illustrative CBPR projects (8) using a multidimensional social movement theory-based framework [ 24 ]. This synthesis, presented elsewhere [ 24 ], resulted in the development of a multidimensional framework through which to conceive and map community change processes in the context of CBPR. In addition, our synthesis demonstrated the relevance of using modern social movement theories, such as resource mobilization theory [ 15 , 20 , 25 , 26 ], political process theory [ 14 , 20 , 21 , 27 ] and framing theory [ 14 , 28 , 29 , 30 ], to understand and examine CBPR processes. More specifically, it demonstrated that CBPR projects, like social movements, can be envisioned as collective processes evolving dynamically and iteratively through a four-stage lifecycle: (1) emergence, (2) coalescence, (3) momentum, (4) maintenance, consolidation, integration or decline. Key elements of this four-stage process include capitalizing on resources, opportunities, and building partnership and collaboration among different organizations and entities. Just like a social movement, CBPR also makes strategic use of collective framing processes to define a representation of a social problem (cause), mobilize around the cause as well as to define a collective action strategy leading to system changes addressing the problem [ 24 ]. Here, we draw on the conclusions of our previous work to design and evaluate a specific CBPR project.

Purpose of the study

The goal of the current study is to assess the community-level processes and intermediate outcomes of a longstanding CBPR initiative developed with an Indigenous community, the Kahnawake Schools Diabetes Prevention Project (KSDPP), using a social movement theory perspective. More specifically, this research builds on a movement-building evaluation framework to assess the general process underlying KSDPP as well as intermediate outcomes related to core movement-building concepts. In keeping with the purpose of most evaluative research, this study aims to provide results that are directly relevant and applicable to KSDPP, but also to highlight useful lessons for CBPR planning and evaluation more broadly.

Conceptual framework

There are a range of evaluative frameworks and benchmarks used to assess social movement building, advocacy efforts and policy-change action [ 31 , 32 , 33 ]. Amongst them, Master and Osborn’s [ 31 ] comprehensive framework, which builds on a literature review of outcomes associated with social change, is particularly relevant for this study. Whereas many existing evaluative frameworks only provide end-of-project benchmarks, Master and Osborn’s framework provides a general perspective of how social movements can be conceived and allows for an meaningful exploration of movements’ development over time. This framework appeared particularly relevant to synthesize the most important concepts of social change.

Master and Osborn’s framework incorporates intermediate outcomes of five core components of movement building: base building and mobilization, leadership, vision, alliances, and advocacy infrastructure (Table  1 ). Each of these five components develop across four stages of movement building, facilitating a comprehensive and dynamic portrayal and assessment of a movement’s evolution over time. This comprehensive array of intermediate outcomes at different stages of a collective action process (distinct from impact outcomes related to a movement’s activities) are useful in the assessment of the development of a CBPR project over time.

The Kahnawake Schools Diabetes Prevention Project

Kahnawake is a north-eastern Kanien’kehá:ka (Mohawk) community of 7859 residents (2017) that is situated on the south shore of the St. Lawrence River, 10 miles from downtown Montreal (Quebec, Canada). The Kanien’kehá:ka are part of the Haudenosaunee, or “People of the Longhouse”, historically known as the Five Nations, or Six Nations Iroquois Confederacy. Traditional and cultural Haudenosaunee values emphasize collective thinking, shared responsibility, listening, taking into account the impact of current decisions on future generations, consensus decision-making, as well as a wholistic view of health, all of which provide a fertile ground for developing a CBPR project [ 34 ]. As a community, Kahnawake has demonstrated independence and autonomy in many domains, resulting in decentralization in the provision of a number of community services such as education, health, youth recreation programs for youth, and social services.

Despite this history of strength and independence, Kahnawake has been transformed by Western colonization, which has created social conditions that promote poorer food and lifestyle choices [ 35 ]. In 1985, two family physicians working in Kahnawake perceived high rates of Type 2 diabetes, and conducted a study to assess the prevalence of this condition in the community. Findings from the study showed that 12% of adults aged 45–64 had Type 2 diabetes, which was twice the rate of the general population [ 36 ]. Study findings also showed a high prevalence of diabetes related complications [ 37 , 38 ]. Based on these results, the physicians made a series of community presentations that raised awareness about diabetes, and shifted perceptions relating to the preventability of this disease [ 39 ]. Acting on this new awareness, community leaders mobilized and sought the expertise of academic researchers to develop a diabetes prevention program which became the Kahnawake Schools Diabetes Prevention Project (KSDPP), a CBPR project with a high degree of community involvement and ownership [ 40 , 41 , 42 ].

KSDPP aims to change the physical environment and social norms of the schools and community by promoting healthy eating and regular physical activity not only among children, but also parents, teachers, and all community members [ 43 , 44 ]. The project initially developed around a school-based component bolstered by community outreach interventions. The school-based component originally consisted of a health education curriculum delivered by teachers in Kahnawake elementary schools and a nutrition policy promoting healthy food choices at school. This policy was later expanded to include the promotion of physical activity and a whole range of healthy lifestyle activities. Community interventions include a variety of activities, many conducted in partnership with community organisations. The central goals of the community interventions are to create environments that support behavior change through activities tailored for parents, grand-parents and other community members [ 34 , 43 ]. While the program of activities is anchored in evidence-based theories of behavior and community change, the core of KSDPP’s actions are based on Kanien’kehá:ka values and traditions, and a wholistic view of health which incorporates the physical, emotional, mental and spiritual dimensions of life, true to a Haudenosaunee perspective of well-being [ 34 , 45 ]. For instance, the intervention’s primary target is elementary school children, which is consistent with the Kanien’kehá:ka value of taking responsibility to protect and promote the health of present and future generations (Seven Generations) [ 43 ]. The general approach of building supportive environments for health is in line with the Kanien’kehá:ka wholistic approach to education which takes into account the broader environment in which children develop [ 46 ]. In addition, KSDPP’s style of governance is deeply rooted in Kanien’kehá:ka values, which involve consensus in decision-making and a collective vision for the community [ 43 ].

Since the project’s inception, many studies have attempted to evaluate the impact of KSDPP on the health status and lifestyles of residents in the community. These studies have shown mixed results in the areas of physical activity, nutrition, weight and rates of diabetes [ 47 , 48 , 49 , 50 , 51 ]. The present study applies social movement concepts to expand and enrich this examination by identifying intermediate outcomes of KSDPP in the area of community mobilization and change, dimensions that are viewed as highly relevant and meaningful by KSDPP stakeholders. The goal of this research evaluation project was to develop a new understanding of KSDPP’s evolution, identify potential areas of improvement, and action paths for further mobilization of community workers and members around the issue of diabetes prevention. Results of the study were meant to inform the work of KSDPP and the greater Kahnawake community.

Research approach and design

We used a case study design, which is a systemic approach to qualitative research that allows the researcher to examine in depth the holistic nature of contemporary phenomena in natural contexts, with a multitude of data sources [ 52 , 53 ]. The case observed is the Kahnawake Schools Diabetes Prevention Project (KSDPP), bounded in time from its first ideation (around 1987) to present.

In accordance with KSDPP principles, this study builds on a community-based participatory approach, involving partnership building, regular exchange among partners, and experience sharing between the researchers, KSDPP intervention staff and the Community Advisory Board (CAB) [ 54 ]. This study uses an interpretivist perspective, which holds that reality is constructed through the meanings developed by social actors, including the investigators. Thus, findings emerged through dialogue and negotiation of interpretations between the researchers and stakeholders involved in this study.

In 2012, the first author approached KSDPP to explore their interested in the innovative idea of evaluating the community level processes and outcomes of KSDPP using social movement theories. As a result, the first author was invited to join the KSDPP research team as a postdoctoral investigator, attend monthly meetings of the CAB and the research team, and to engage in KSDPP activities and with the community of Kahnawake. As a settler, the first author did not have any previous research experience in partnership with an Indigenous community, and therefore sought to immerse herself in the culture and realities of the community. During her work, she was supervised by and benefited from the valuable advice, insight and knowledge of community leaders (AMG and AMC). The research proposal was designed and developed in full partnership with the KSDPP team to ensure cultural relevancy, and benefits for both KSDPP and the broader community. Stakeholders were involved in developing the research questions and methodology, as well as in data collection, the interpretation of findings and dissemination of results.

Data collection

Two data collection strategies were used in this case study (1) document review and (2) talking circles with four important stakeholder groups (data sources are described in Table  2 ).

Included in the review were documents that provided a comprehensive portrait of KSDPP’s evolution since 1994 in terms of key aspects of collective action such as leadership, community mobilization, KSDPP’s discourse and meta-narrative, alliance and partnerships, as well as program of activities. Documents reviewed were past and current KSDPP summaries of activity or work plans covering the years 1994 to 2016 ( n  = 12), as well as published scientific papers stemming from the project ( n  = 39). Organizational documents dating from before 2006 were only available in paper format and were digitized. Scientific publications that included KSDPP as one of a number of cases and published abstracts were discarded ( n  = 6), since these publications only provided shallow descriptions of KSDPP and redundant information. A list of all included publications is presented in Additional file  1 . Scientific and organizational documents were collected in January 2016 through direct solicitation, or downloaded from KSDPP and the research team websites ( ksdpp.org ; pram.mcgill.ca ) as well as a bibliographical database.

Talking circles are widely used to collect data in many Indigenous contexts, offering a means to collect data that encourages story-telling and collective listening – both important elements for sharing and gathering information within Indigenous contexts. Importantly, talking circles have been accepted by the Kahnawake community as a relevant data collection strategy. In a talking circle, participants sit in a circle and discuss specified topics until consensus is reached. An object (an eagle feather, a talking stick or a stone), is passed from one participant to another and the holder of the object has an opportunity to speak [ 55 ]. Talking circles were deemed useful in gathering stakeholder perceptions about the evolution of KSDPP, its collective action process and strategies, leadership, vision and partnerships. They also served to document the last stage of the project given the dearth of scientific publications after 2009. A talking circle guide, informed by the conceptual framework, was developed in partnership with the KSDPP team. This guide had questions about: (1) the importance of diabetes for the community; (2) the evolution of mobilization around diabetes in the community over the last 20 years; (3) community leaders (people or organizations) involved in diabetes prevention (4) perception of KSDPP and its impact over the last 20 years; (5) KSDPP’s vision (goal) (6) evolution of KSDPP’s action (7) community partners and collaborators of KSDPP; (8) strengths of KSDPP and actual challenges for diabetes prevention.

Participants involved in the study talking circles ( n  = 24) were also KSDPP stakeholders, i.e. individuals or groups with a vested interest in the focus of the evaluation or research [ 56 ]. They included: (1) KSDPP intervention staff and Community Advisory Board (CAB) members; (2) research team members; (3) community workers; (4) community members (see Table  2 for a full description). Recruitment of talking circle participants proceeded on a voluntary basis. Participants in the first two circles were recruited through a formal email invitation sent to current and past KSDPP staff members, CAB members and researchers, one month prior to the beginning of the study (the KSDPP team assisted in the creation of the lists). Participants in the remaining circles were recruited using general invitations mailed directly to a list of partner organizations created by the KSDPP team, announcements in the local newspaper, and direct solicitation of community members at community events, such as community walks.

In total, 5 talking circles were held between October and December 2015, each including 2 to 7 participants. In general, there was one talking circle for each stakeholder group, except the community worker group (group 3), which required 2 talking circles to fit the availability of participants. Talking circles were held in community facilities (community rooms and schools) over lunchtime to accommodate participants. Participants were provided with a light meal, which is a culturally appropriate manner in which to thank them for their participation. The average length of the talking circles, including the time spent explaining the study, was 2 h (range 1 h to 2 h 20 min). Talking circles provided a respectful and ordered structure through which to collect in-depth data, triangulate information, and build a common representation of events and times. Consensus was achieved when everyone felt that they could agree with the suggested statement. Following Kanien’kehá:ka decision making style, all participants came to ‘one mind’ as close as possible, all agreed to have a voice in the discussion.

Ethics approval and consent to participate

As with all KSDPP research projects, this project was conducted in accordance with the KSDPP Code of Research Ethics [ 57 ], which serves as a binding research agreement between the researchers and the community. Ethical approval was obtained first from the CAB and then from the McGill University ethics institutional review board. Participants in the talking circle provided individual written informed consent.

Data analysis

The analytic technique used in this study is framework analysis, a method for analysing primary data in applied social research that draws upon the work of Bryman and Burgess [ 58 ] and Miles and Huberman [ 59 ]. Framework analysis is useful for synthesizing knowledge from diverse sources [ 60 ]. This analysis technique typically involves five phases [ 61 ]: (1) familiarisation with the data; (2) identification of a relevant thematic framework; (3) application of the thematic framework by indexing all the data to specific themes; (4) organization of the data according to themes in a chart containing distilled summaries of views and experiences; (5) interpretation of findings, which involves mapping the range and nature of phenomena, creating typologies and finding association between themes.

Hard copies of publications (mostly organizational documents dated 2005 or earlier) were scanned and converted to PDF. All talking circles were audio recorded and transcribed verbatim. To perform the analysis, a database including all sources of data (full-text scientific papers, organisational documents, and transcripts from the talking circles) was constructed using QSR NVivo 11 [ 62 ]. Using the framework analysis method, the first author immersed herself in the data, identifying key ideas (mobilization, leadership, goal and vision, collaboration and partnership, activities and strategies), and then searched the literature for a relevant thematic framework. Our work in this phase was informed by the results of a framework synthesis we conducted previously that demonstrated the relevance of modern social movement theories in the study of CBPR projects [ 24 ]. For the current study, we chose to use Master and Osborn’s movement-building framework, which provides a means to examine the development of various components of social movements over time. Based on Master and Osborn’s framework, the first author developed a coding grid and performed sentence by sentence coding to assign text to specific themes (components and stages). At this stage, we also added an inductive component building on thematic analysis to identify potential new themes from the data [ 59 ]. All coded material was organized in a chart presenting summaries of views and experiences for each theme, and facilitating a comprehensive interpretation of KSDPP process and intermediate outcomes in terms of movement building.

The first author conducted the majority of the analysis, but all provisional interpretations were discussed with the KSDPP research team, staff and CAB members. Two formal data interpretation sessions were held to discuss interpretations, add context to information collected, and facilitate a better understanding of project documentation. For instance, during these sessions participants built consensus on the start and end dates of each stage, as well as markers of change for each period (referred to as “benchmarks” in the framework). The resulting interpretation was therefore consensual and co-created by the different team members. Construct and internal validity of the study were ensured by triangulation of data sources and methods, member checking, and the in-depth involvement of the researcher in the field. Finally, reliability of the study was improved by the development and use of a case study protocol and the development of database and a chain of evidence [ 52 ].

Results show an innovative and chronological perspective of KSDPP’s evolution as seen through a social movement lens, as well as intermediate outcomes associated with different dimensions of movement building achieved by this project over time. The inductive component of the analysis suggests new benchmarks pertaining to some movement-building components (bolded in the table). The dates proposed for each stage are approximate and should be understood as temporal benchmarks, as phases often overlap.

The next section outlines the different stages of KSDPP in narrative style, describing the important benchmarks reached, which are summarized in Table  3 .

The emergence of KSDPP: from early 1987 to mid-1997

The first stage of KSDPP, which we call emergence, began in 1987 when community leaders first evoked the idea of developing an intervention to prevent type 2 diabetes in Kahnawake [ 39 ].

The first stage emerged following a shift in the perception of diabetes following a lengthy community awareness-building process implemented from the mid- to late-1980s [ 39 , 43 ]. During this process, baseline research results were shared with the community shifting the perception of diabetes from being a personal issue to a community issue. The idea that diabetes could be prevented was slowly articulated in the late 1980s and early 1990s [ 39 ].

Volunteer community leaders, including elders and family physicians who raised the alarm about diabetes, invited academic researchers with expertise in community research to join the effort of elaborating a project proposal and developing a partnership [ 43 ]. After a few unsuccessful attempts, the team secured national research and intervention funding in 1994, and formally initiated the project [ 41 ]. One of the early exercises of the team consisted in elaborating operating guidelines and conditions for the participatory research process underlying KSDPP through a Code of Ethics [ 43 , 57 ]. “The process of creating a KSDPP partnership involving community researchers, academic researchers, and the community has been facilitated and strengthened by the joint development of a Code of Research Ethics during the first year of the project” [ 41 ].

The underlying philosophy of KSDPP (a participatory research process) was easily implemented because it converged with a Kanien’kehá:ka tradition of consensus decision-making [ 43 ]. At the same time, the partners also defined an inspirational and shared vision for Kahnawake that portrayed a community free of diabetes, living healthily and in wholistic balance. This vision, which laid the ground for the elaboration of strategic goals, was framed according to important cultural values of the Kanien’kehá:ka, such as a collective concern for the welfare of future generations (Seven Generations) and a wholistic philosophy of health [ 34 ]. As mentioned by one talking circle participant, in the first stage of KSDPP, collective reflection around the project, its goals and processes was highly important and helped set the stage for future steps:

“It took a year, a year and a half to prepare things once we had the grant. I remember saying things like ‘We need to do things, it takes time that we are out there. If we want to have an effect, we need to do things’. So we did such things as developing a code [of research ethics], a vision, developing all those kinds of things that take a lot of time, take a lot of discussion of participatory nature (…). I think that the way we did things put a very solid foundation; that what is sustained there, this kind of vision, this kind of relationship, the code of research ethics, and those kinds of things are traceable through those times.” (group 2)

KSDPP developed from a partnership that was initially formed through an alliance of professionals from the Kahnawake Education Centre, the Kateri Memorial Hospital Centre and Kahnawake Shakotiia’takehnhas Community Services (social family services), as well as researchers from McGill University and Université de Montréal. A talking circle participant (group 1) discussed the importance KSDPP’s roots in community: “I think that the grassroots connection that KSDPP has from the beginning is a very important strength. It’s the people from the community that… we, people in the community who are associated with KSDPP”. Over the first three years, the partnership recruited around 40 volunteers from multiple local organizations who formed the KSDPP Community Advisory Board (CAB) [ 43 ]. This CAB was (and is still) responsible for supervising all aspects of the project, from the design of the intervention through implementation and assessment. Through this new structure, “partnerships among local health, education, recreation, and community service organisations were formed, enhancing community participation” [ 41 ] as well as collaborative leadership.

In the first years of program implementation (1994–1997), the intervention team was staffed by two full-time community members, selected for their leadership and their role as agents for change [ 43 ]. As evoked by a talking circle participant (group 3), the choice of these persons was strategic, because they “came from the education system, so not only they were from the community but they were teachers so everyone knows them in that circle”. These staff members participated in formal training activities in order to acquire new skills in health promotion or enhance their competencies [ 41 ]. The program also provided many opportunities for collaborators to acquire new competencies. For instance, KSDPP supported the implementation of a new health curriculum in the elementary schools. While the curriculum was created by nurses and a nutritionist it was developed to be delivered by teachers (as opposed to health care professionals) who assumed full responsibility for the program in 1997 [ 46 ].

Coalescence of KSDPP: from mid-1997 to 2000

Beginning in August 1997, KSDPP experienced a series of events prompting the partnership to reinforce, take shape and deepen its ties in the community.

As the initial 3-year intervention and research grant was coming to an end in mid-1997, KSDPP began to seek new sources of support [ 41 ]. In June 1997, community partners (the Mohawk Council of Kahnawake, Kahnawake Shakotiia’takehnhas Community Services, and the Kahnawake Education Center) provided funds to enable the project to continue for one year (1997–1998) (funding was for the intervention component of KSDPP) [ 63 ]. These new funding partners, who were essentially new constituencies, were fully committed to the project. For talking circle participants (group 1), the fact that community partners provided funds for KSDPP to continue is an indicator of the value given to KSDPP by community stakeholders, who “were highly mobilized by the cause and pooled resources”. Following the year of community funding, continuing funds were secured from external private foundations (1999–2001).

Already at this stage, the participatory decision-making process and collaborative governance of the project were well established. In fact, study findings for that period point to a participatory democracy or non-hierarchical decision-making process as the primary mode of KSDPP governance [ 42 , 64 ]. For instance, it was reported that “The influence of multiple partners in determining the overall direction of KSDPP demonstrates the responsiveness and accountability of the egalitarian leadership style promoted by project staff” (p. 184) [ 64 ]. In addition, in one of the talking circles (group 3), a participant from a community organization and former CAB member described the way KSDPP invited partners to join the CAB, emphasizing the leadership style that KSDPP put in place:

“(KSDPP) went up there, spoke and invited people to come and sit on the Community [Advisory] Board… [this] was a place where your ideas were acceptable. Like you had to be the ones to write the terms of reference, you had to be the one for this mission, (...) it was always like a corporate thing.”

KSDPP’s coalescence was characterized by the translation of KSDPP’s vision into a full and workable action strategy that builds on, and integrates traditional and cultural values: “Activity implementation was embedded within an overall program intervention cycle directed towards promoting living in balance, in turn, a reflection of local cultural values” [ 34 ]. Living in balance, which “reflects being well in mind, body, emotion, and spirit” [ 34 ] is congruent with the Haudenosaunee wholistic approach of health [ 34 , 46 ]. By 1997, the team had established the core intervention activities and had experience implementing activities in the community [ 65 ]. Through collaboration community partners leveraged and optimized resources, shared responsibilities and supported each other’s efforts [ 65 ]. At that time, the partnership broadened to other community partners (such as teachers teaching the new curriculum in 1997) [ 46 ] thereby extending awareness and commitment to the cause of KSDPP (talking circle, groups 1): “At that time, teachers began to be more comfortable with the new curriculum, and were very committed to the cause”.

An analysis of programming approaches implemented in 1996–1997 reveals that half of the activities were conducted by KSDPP independently whereas half resulted from collaborative partnerships with community organizations [ 65 ]. Interestingly, this analysis “found that more than two thirds of collaborations occurred in response to invitations received by KSDPP from other community entities” [ 65 ]. In these collaborations, community members and organisations “brought their knowledge of the community, and contributed ideas on how best to carry out the activities in which they were involved” [ 41 ]. According to talking circle participants (group 1), trust and respect characterized the relationship with the education system at that time.

KSDPP’s moment: from 2001 to 2006

Based on its experience in the second stage, KSDPP developed into a stronger organization in the third stage, with well-established partnerships in the community, a well-oiled program of activities and significant community and political recognition. During this period, KSDPP became a leader in Canada for addressing diabetes prevention among First Nations communities [ 50 ].

In 2001, KSDPP secured major funding for 5 years from the Canadian Institutes of Health Research (CIHR), permitting the hire of an additional 4 people (including a public relations officer) and the development of the KSDPP Center for Research and Training in Diabetes Prevention [ 43 , 66 , 67 ]. This grant, which acknowledged KSDPP’s experience, expertise and leadership in diabetes prevention and community mobilization, allowed the organization to further community mobilization within Kahnawake, while developing a community mobilization training program to disseminate its intervention model to over 30 Indigenous communities across Canada (from 2001 to 2014) [ 68 ]. Inside its own community, KSDPP also reached a high level of credibility owing to its participatory approach, as emphasized by some participants: “I think [that] a lot of the development of KSDPP was done alongside community members so it taught us to have credibility in community” (group 1). “The other organizations within the community have come around recognizing the central role that KSDPP can play in [health promotion and diabetes prevention]” (group 2). At that time, “KSDPP’s visibility in and acceptance by the community suggests that it is perceived as an accessible community resource for health promotion” [ 65 ].

During this stage KSDPP’s leaders acquired external recognition from public institutions. For example, in 1999, a KSDPP staff member who was also a community researcher was elected to the Board of Directors of the Canadian National Aboriginal Diabetes Association (NADA), serving as vice-chairperson until 2002 and eventually chairperson from 2002 to 2004. In the years 1999–2001, a physician-researcher deeply involved in KSDPP’s formation and work was elected president of the North American Primary Care Research Group (NAPCRG). She was key in the development of a new policy promoting participatory research in this international organization. In 2010, KSDPP received a Partnership Award from the Canadian Institutes of Health Research for their exemplary work [ 69 ]. Even if not specific to the third stage, this award recognized the strength of KSDPP’s work in these times, as well as its contribution to developing ethical agreements with Indigenous communities.

From 2001 to 2006, with funding from the CIHR and the National Aboriginal Diabetes Initiative (Health Canada), KSDPP became active on many levels and continued to extend its reach and vision [ 41 , 70 ]. As indicated in a scientific article describing KSDPP over this period, “this programme has grown, it has sustained itself and enriched itself in interaction with the community (…)” [ 41 ]. KSDPP’s staff disseminated information about the program locally, nationally and internationally by participating in national forums addressing diabetes and health issues for Indigenous people [ 41 ]. Inside the community, a KSDPP public relationship office was created to actively disseminate KSDPP’s news through radio shows, newsletters and other means of communication [ 70 ] (talking circle, group 1). In 2000, the local Onkwata’karitáhtshera Health and Social Service Research Council was created by the community health board to act as the community ethics board for all health and social research conducted in Kahnawake. This entity acknowledged KSDPP’s CAB as a valid and autonomous ethics authority to evaluate proposals for diabetes prevention research, and added KSDPP’s Code of Research Ethics to its original research agreement terms (talking circles, groups 1 and 2).

At that time, most activities of KSDPP were already collaborative in nature [ 34 ], capitalizing on a core of partner organizations that have “taken KSDPP to work together more or less systematically” (talking circle – group 2). They also developed new partnerships with organizations in the private sector of the community, including a local computer software company [ 66 ]. Collaborating with new partners allowed “the creation and production of new activities and activity tools (e.g., diabetes awareness booth, cooking demonstrations with students)” [ 34 ]. Respect among partners has allowed the program to consistently evolve: “Because each partner’s voice was heard and respected, constructive negotiation occurred allowing transformations in the programme in a way that did not threaten its identity” [ 41 ].

KSDPP’s momentum was characterized by the full achievement of its collective action strategy, building on a core program of activities that achieved maturity with the addition of other activity components. A paper describing KSDPP at this period emphasizes that the project “evolved by increasing both the reach and intensity of healthy living interventions” [ 43 ]. In addition to the core activities, KSDPP’s program expanded to include preschool children and also engaged adolescents in youth empowerment projects through the community high school [ 66 ]. By 2003, there were more than 100 different interventions per year, many in partnership with other community organizations [ 66 ]. A descriptive case study of KSDPP at this period highlights that: “There is continuous momentum in active participation of community members involved in diverse activities ranging from research to supporting interventions” [ 66 ].

KSDPP’s maintenance, integration and consolidation: from 2007 to present

The current stage of KSDPP can be characterized by the emergence of a new form of leadership, resource constraints, lower levels of community mobilization and sensitiveness to KSDPP’s message, as paradoxically KSDPP’s vision and goals have become more integrated inside the community and within the agendas and priorities of partner organisations.

Major decreases in funding since 2006 have resulted in the majority of the staff, including the public relations position, retiring from the project. This made it difficult for KSDPP to keep the momentum going in mobilizing the community, as explained by a participant: “(…) To me, [KSDPP brought] very positive changes, but then I guess because of decreased funding and decreased staff, the momentum didn’t keep going” (group 3). According to talking circle participants (group 1), the administrative environment in the community became less supportive of KSDPP activity. Decreases in resources, coupled with a lack of innovation, rendered KSDPP less visible. This phenomenon was highlighted by some community participants (group 4): “When it was very popular, like in the first years… the people knew about it, they were active in schools… Some people didn’t like some of the ideas they were bringing, but it was more known and now it’s very quiet, we don’t hear about it anymore”. An hypothesis evoked is that KSDPP’s action became so integrated into the community that it appeared less noticeable to community members. One participant (group 1) mentioned that “[KSDPP] has become part of the social fabric in the community”, which is, paradoxically, a form of success.

The current stage is characterized by the rise of a new generation of leaders in different parts of the partnership, including the KSDPP research team and KSDPP intervention staff. From a research team perspective, since 2006 the research team has been involved in smaller research projects (many led by postgraduate students, under the supervision of the KSDPP research team) and has included new determinants of diabetes prevention (i.e. food security, adequate sleep) (talking circle, group 2). From a staff perspective, this era is also seen as a turbulent one, with high levels of staff turnover and hiring based on programmatic activity and the availability of funding. New staff members have brought a fresh perspective on the KSDPP collective action strategy and vision, providing renewed energy, all the while ensuring continuity in KSDPP’s overall work (talking circle, group 1). As explained by one participant (group 3): “There have been many different people, different staff over the years, but I see now there are a few new young [people] who work for KSDPP and I see the exact same strength. It’s the way that they’re part of the community and the way that they go and mobilize all their contacts within the community”.

During this stage, the vision promoted by KSDPP (a healthy community, free of diabetes) and the norm underlying this vision (diabetes is a preventable disease) appeared as successfully disseminated in the community. Some participants described this shift in beliefs and norms: “There was a whole change (...), this idea of diabetes being preventable has now become the normal way of thinking…”(group 1). “I remember (...) people coming in and teaching you different things about eating healthier and being healthier and being active, it was sort of like new to us. And now it’s like normal for all the kids to have a nutrition policy in the schools” (group 4). Talking circle participants involved directly in KSDPP (group 1 and 2) were unambiguous about the role the project played in promoting this vision: “KSDPP certainly played the role of that catalyst [for diabetes prevention] in the community” (group 1). “KSDPP was the catalyst to the whole movement. They were the ones that caused this whole spark and this whole awareness and this [desire] to do something about it and the energy that just infiltrated the whole community” (group 2). However, the vision is still not shared by everyone in the community, with some interpreting KSDPP’s message and efforts to implement it as a form of policing: “(…) [some community organizations] have sodas and junk food and things like that in their vending machines. And again, it’s that response ‘It’s our choice to do that” (talking circle, group 1). “I think that there’s part of the population that think that health promotion and diabetes prevention is important but there’s a part of the population that don’t wanna hear about it” (talking circle, group 4).

Regarding the issue of collaboration, KSDPP has allowed many partners to build capacity, and these partners are now taking over some of the responsibilities initially held by KSDPP. For instance, a Masters student research project led to the development and implementation of a physical activity policy in the elementary schools (2011–2013) and a PhD student project conducted in collaboration with a multi-sectorial committee contributed to the development of an active school transportation project (2013–2015). These projects involved representatives of partner organizations, who are now assuming the leadership of these initiatives [ 71 , 72 ]. A staff member mentioned: “It’s intentionally with everything KSDPP does… we’re working this way, we’re putting ourselves in with everyone else, intentionally trying to mobilize people to take ownership of these issues for themselves” (group 1).

KSDPP’s continuous action has resulted in the integration of its collective action agenda, i.e. fostering healthy eating and physical activity, in some partnering organisations. For instance, the physical activity policy (2011–2013) was developed in close collaboration with the community elementary schools [ 73 ]. Participants emphasized the pervasiveness of KSDPP’s agenda on partner organisations: “People have talked about the importance of the wellness policies in the schools and I have a very strong feeling that those would never ever have happened in the early years of KSDPP” (group 2). “KSDPP as a separate entity is able to challenge either the utility of that direction or to explore other areas that perhaps the organisations aren’t focusing on at the moment” (group 1). However, participants (group 1) recognize that there is still resistance from some sectors of the community and some participants (group 2) highlighted the need to build stronger collaborations with some health organizations in the community to get funding instead of competing with each other.

New proposed benchmarks

Findings from the study point to potentially new benchmarks in the examination and assessment of the development of KSDPP (bolded in Table  3 ). For instance, in the third stage, a recurrent theme in the “vision and frames” component was broader dissemination of the KSDPP vision and approach across levels of implementation (i.e. local, national and international). This phenomenon has been emphasized both in KSDPP publications over this period, and by KSDPP stakeholders in the talking circles. We therefore propose that broadening dissemination of a project’s vision might be a significant benchmark at this stage. Using the same rationale, additional benchmarks are proposed for stage 3 (Alliances, partnerships, networks; Advocacy agenda and action strategy) and stage 4 (Base building and mobilization; Alliances, partnerships, networks).

KSDPP’s areas of potential improvement

By comparing the actions and processes of KSDPP to the chosen theoretical framework, this analysis has exposed potential areas of improvement for the initiative.

First, and as emphasized by participants, is the question of continuing leadership: “Looking ahead, [one thing to do] is nurturing the torch bearers for health promotion, diabetes prevention. I don’t know if we have enough of those still generated from KSDPP (…) We served our term and beyond (…) and there needs to be more.” (group 2). Even if some evidence shows a renewing of the research and intervention leadership in KSDPP, there is still some room to plan and foresee the future of the partnership leadership, which is essential in avoiding stagnation or dissipation in a movement. Such an exercise could involve “creating time for intellectual and spiritual reflection by leaders as well as a commitment to training a new generation of leadership” [ 74 ].

Second is the need to continuously review and redefine the partnership’s vision and strategies. For instance, one talking circle participant (group 1) suggested broadening the vision and collective action strategy to focus more generally on wellness: “I think one area that we have talked about is the area of wellness in general (…). I think KSDPP started where it was safe, around physical activity and healthy eating (...) we’ve already started to work with stress, mental health and wellness. So is this an area that KSDPP will develop more fully in the future?” Along similar lines, some participants (groups 3 and 4) suggested finding more efficient strategies to ingrain healthy behaviours in children, such as more systematic and direct engagement with parents: “I think sometimes where we miss the mark is that it was aimed primarily at the schools, but it’s the parents who are the role models, it’s the parents who are making the purchases of the food in the home and maybe sometimes there should be more emphasis put on the parents than on the children” (group 3). As suggested by some participants (group 2), renewing KSDPP strategies may also require scaling up or developing further alliances with the political and economic sectors of the community so as to tackle political and systemic determinants of diabetes prevention and health promotion that can’t be addressed by KSDPP alone:

“Something that we talked about (...) is working with the economic sector of the community on health promotion. (...) Because if we look at the people that are selling food, are providing food services, we know that they are supplying demand; the community is demanding salt, fat, sugar, carbs, etcetera. We want them to shift to something else but we always backed off from them.”

The end of this study coincided with KSDPP’S strategic planning exercise (“strategic conversations” with key community actors and members). The first author was invited to participate in the design of these conversations and integrated the results of this study, including potential area of improvement and action paths, in this reflection.

This framework analysis, based on a social movement-building framework [ 31 ], portrays the development of KSDPP in a four-stage process of emergence, coalescence, momentum and maintenance/integration; each stage assessed by the achievement of intermediate outcomes, and influenced at different levels and by different kinds of resources, and mobilization, partnership and collective action activities. Based on the framework benchmarks, we conclude that KSDPP has reached the last stage of movement-building, which is the maintenance and integration stage into the Kahnawake community.

Based on this analysis, we can see that KSDPP’s overall reach has expanded from its original vision which was focused on diabetes prevention. Framing KSDPP as a social movement, this study points to other significant processes and outcomes, such as creating awareness; shifting norms and beliefs about diabetes in the community; fostering community mobilization, collaboration and leadership around this issue; building community capacity, skills and expertise in diabetes prevention; creating culture of collaboration and resource sharing among community organizations and permeating the diabetes prevention agenda into other organizations. Previous studies that have looked at KSDPP’s outcomes have tended to provide a mixed picture of the project’s impact on health and the behaviors of residents. One could say that the design of these studies may have failed to capture events and trends in the broader context that influence people’s behaviors and health, such as the introduction of satellite television in the community in 2008, the increasing availability of fast-food restaurants over the last 20 years, as well as strong positive secular trends in the prevalence of obesity [ 47 ]. We believe that studies with an exclusive focus on health outcomes pose paradoxes to the very nature of CBPR, which is based on the ecological premise that “an individual’s behavior is shaped by a dynamic interaction with the social environment” [ 6 ]. In addition, community-level changes and processes in their own constitute valuable outcomes, and they sometimes have a “more profound impact on well-being than did the intended outcomes of planned interventions” [ 5 ]. Our study highlights important community-level processes and outcomes in Kahnawake, which can be considered as transitional steps towards health improvement.

A movement-building framework such as that by Masters and Osborn [ 31 ] is an applicable and innovative tool with which to understand and assess CBPR projects. Although the movement-building framework has been applied retrospectively in the current study, it can be used prospectively to encourage ongoing reflection and assessment in the context of CBPR [ 31 ]. Using the framework retrospectively can help coalitions situate and assess themselves with respect to the collective action they led and the progress made over the years. Using the framework prospectively can assist coalitions plan ahead by providing general guidance about aspects of the action that are important at a specific moment. While the phases of the framework are modeled on social movement development stages, they nonetheless provide useful markers to assess the development and progress of CBPR projects and other collective action strategies over time, Furthermore, the core concepts of movement-building (i.e. base building and mobilization; leadership; vision and frames; alliances, partnerships, networks; advocacy agenda and action strategy) resonate with the CBPR approach and allow an identification and examination of core CBPR processes and action. Moreover, the benchmarks associated with each phase help identify key accomplishments at each stage as well as areas where additional efforts need to be focused. For instance, it suggests that in the second stage (coalescence) of development, CBPR teams should not expect to pervade the agendas of collaborating organizations, but should rather focus on refining collective action goals; in addition, CBPR leaders should not expect to be recognized from the base, but rather should work at building and expanding core collaboration.

However, while the framework offers a number of distinct intermediate goals on which to focus, it does not provide strategies with which to achieve these goals, which might be a limitation to translating findings into implementation. For example, in the third stage (movement’s moment) of implementation the movement/CBPR project is supposed to see “public support of the meta-narratives increase”, but the framework doesn’t specify how to achieve this benchmark; it only offers examples of trackable progress.

We believe that social movement frameworks, such as the one used in this study, apply particularly well to long-standing, sustainable community-based projects. However, it is important to acknowledge that these frameworks may not be useful or relevant to all CBPR projects. In the case of KSDPP, the specificities of Kahnawake and the Mohawk culture favored the emergence of this form of large, sustainable community-based projects – one that is similar to social movements.

The current study assessed the processes and intermediate outcomes of the Kahnawake Schools Diabetes Prevention Project using a social movement building framework. This framework analysis describes the development of KSDPP’s in a four-stage process, each stage defined and described by the achievement of important intermediate outcomes and the identification of potential areas of improvement. The framework’s central concepts provide useful markers to situate long-standing and sustainable CBPR projects within its own life course, and inform the development of recommendations to provide guidance for future action. This study proposes some innovative insights regarding the evaluation of CBPR projects and the assessment of their progress by building on their similarities with other forms of collective action.

Abbreviations

Community Advisory Board

• Community-based participatory research

Canadian Institutes of Health Research

Kahnawake Schools Diabetes Prevention Project

National Aboriginal Diabetes Association

North American Primary Care Research Group

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Acknowledgements

MCT gratefully thanks the Kahnawake Schools Diabetes Prevention Project and the community of Kahnawake for their support and their contribution to this project. Special thanks are owed to Judi Jacobs (KSDPP general manager), who provided a helpful support with data collection logistics and community research review. The authors wish to acknowledge the contribution of Selma Chipenda-Dansokho, who carefully reviewed the manuscript for English.

MCT was awarded a postdoctoral fellowship from the Canadian Institutes of Health Research, Research in First Nations, Métis and/or Inuit Health (302299).

Availability of data and materials

The datasets generated and/or analyzed during the current study are not publicly available due to the KSDPP research agreement, but are available from KSDPP on reasonable request ([email protected]). KSDPP retains ownership of all data, and control over data and their use is managed by the KSDPP Community Advisory Board. Scientific publications analyzed in this study is presented in Additional file  1 .

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This research has been first designed and developed by the principal author (MCT) in collaboration with co-authors (AM, DH, AMC) and KSDPP. MCT mainly collected the data and carried out the first analysis. Results have been interpreted and discussed by all authors (MCT, AM, DH, AMC, AMG). MCT wrote a first version of the paper. All authors read and approved the final manuscript.

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As with all KSDPP research projects, this project has been conducted in accordance with the KSDPP Code of Research Ethics ( http://www.ksdpp.org/elder/code_ethics.php ), which serves as a binding research agreement between the researcher and the community. Full ethical approval was obtained first from the Community Advisory Board of KSDPP and then from the McGill University ethics institutional review board (project A11-B52-14A). Participants in the talking circle provided individual written informed consent.

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Additional file 1:.

List of scientific and organisational documents included in the document review (n = 51). (DOCX 25 kb)

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What does it mean to do research within a community?

Some researchers do studies in a lab. Some do studies in a clinic. Some do studies in hospitals. And some do studies within a community. You might be thinking, what does it mean to do research within a community? What do researchers even mean when they say “community”? Why do they want to do research with a community? How do they learn about communities? These are all great questions! 

“Community” can mean a lot of different things when it comes to research. Researchers think about communities in many different ways. A community could be people who live in the same area. It could be people who are in the same age group (like children, or older adults). It could be people who share the same identities, speak the same languages, work the same jobs, experience the same health issues, join the same social media groups, enjoy doing the same activities…or people who feel connected to each other for any of these reasons, and others!    

Just like there are many different types of communities, there are a lot of reasons why researchers might be interested in doing research with communities. Some researchers want to find out about how people live their lives within their communities to help improve everyday health. Some want to figure out what the most important health issues are in a community. And others want to see if a new program might help make communities healthier.     

How do researchers learn about communities?  

Imagine you just moved to a new town – how would you try to learn about your new home? Would you go to some events? Try to meet new people? Talk to your neighbors? Find groups that do activities you like? Now, if you were a researcher, how would you try to learn about a community you wanted to work with? If your answers seem similar, that’s because…well…they are. When researchers want to learn about communities, the best thing they can do is (you guessed it) get out there! As a researcher tries to learn more about a community, they might go to events, volunteer with community groups, or meet with people who are interested in the same health topics as they are. They might try to find out what research projects are already going on in a community by talking to other researchers. They might try to find out what health topics are most important to community members by looking at community health reports, or maybe even by trying to organize a listening session where community members come and share their thoughts and feelings about a research topic. The more time a researcher can spend learning about a community, the better their research can be! If you see a researcher out in your community before a research project starts, they might be trying to:  

• Build trust and relationships with community members  
• Choose a research topic that the community is interested in  
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• Learn what results community members want to see from the research   
• Figure out what might make it hard for community members to join a research study and what might make it easier  
• Learn if the community wants to help plan, do, or share the research  

How can researchers work with a community on a research project?  

One of the most important things a researcher can learn when they want to work with communities is how much a community wants to help plan, do, and share the research. Sometimes research projects happen  in  communities. Research that happens  in  communities is called  community-based research . You might also think of research as happening  on  communities (research should not feel like it is happening on you!). Well, research can happen  with  communities, too. Working  with  communities on a research project is called  community-engaged research .   

Even though community-engaged research is one type of research, these projects can all look really different. There are many ways to “engage” with communities on a research project. This is why it is so important for researchers to talk with communities about how involved they want to be in planning, doing, and sharing the research. Researchers can work with community members to…  

Researchers can work with communities on one part of a research project (like PLAN), or all parts of a research project (PLAN, DO, and SHARE). And sometimes researchers will work with the same communities on many different research projects! It all depends on the researcher, the study, and what the community wants.  

What if researchers really want to put the community in the driver’s seat?  

Sometimes, when communities are really involved with research, it is called  community-based participatory research or CBPR . In community-based participatory research projects, communities aren’t just doing research  with  a researcher – they are leading the research! Community-based participatory research is done through a true and equal partnership of community members and a researcher or research team. The ideas, research topic, study design…pretty much everything about the research…is driven by community members. They have the power to make decisions about all parts of the study and how the research is done. Community-based participatory research studies usually try to understand big issues impacting communities (maybe something like access to healthcare or poverty within a community) and try to find solutions through policy and social change. This type of research takes a lot of time, strong relationships, and trust between community partners and researchers.    

So, to wrap it all up…      

There are many researchers out there who work with communities on research. Working with communities to do research takes time, trust, and effort – but it makes the research so much better for everyone!   

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• Research article
• Open access
• Published: 30 March 2021

Exploring community engaged research experiences and preferences: a multi-level qualitative investigation

• Hae-Ra Han   ORCID: orcid.org/0000-0002-9419-594X 1 , 2 , 3 ,
• Ashley Xu 1 ,
• Kyra J. W. Mendez 1 ,
• Safiyyah Okoye 3 ,
• Joycelyn Cudjoe 4 ,
• Mona Bahouth 1 , 5 ,
• Melanie Reese 2 , 6 ,
• Lee Bone 2 , 3 &
• Cheryl Dennison-Himmelfarb 1 , 2  

Research Involvement and Engagement volume  7 , Article number:  19 ( 2021 ) Cite this article

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Community engagement may make research more relevant, translatable, and sustainable, hence improving the possibility of reducing health disparities. The purpose of this study was to explore strategies for community engagement adopted by research teams and identify areas for enhancing engagement in future community engaged research.

The Community Engagement Program of the Johns Hopkins Institute for Clinical and Translational Research hosted a forum to engage researchers and community partners in group discussion to reflect on their diverse past and current experiences in planning, implementing, and evaluating community engagement in health research . A total of 50 researchers, research staff, and community partners participated in five concurrent semi-structured group interviews and a whole group wrap-up session. Group interviews were audiotaped, transcribed verbatim, and analyzed using content analysis.

Four themes with eight subthemes were identified. Main themes included: Community engagement is an ongoing and iterative process; Community partner roles must be well-defined and clearly communicated; Mutual trust and transparency are central to community engagement; and Measuring community outcomes is an evolving area. Relevant subthemes were: engaging community partners in various stages of research; mission-driven vs. “checking the box”; breadth and depth of engagement; roles of community partner; recruitment and selection of community partners; building trust; clear communication for transparency; and conflict in community engaged research.

The findings highlight the benefits and challenges of community engaged research. Enhanced capacity building for community engagement, including training and communication tools for both community and researcher partners, are needed.

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Plain ENGLISH summary

Involving communities in the research process can make better the way research is planned, carried out, and used. With growing interest and support for community engagement, it is important to understand the views and insights of people who experienced community engaged research. To explore the key lessons learned by community engaged research teams, we held five group interview sessions with 50 research investigators, research staff, and community partners. Our findings showed that community engagement is not static but a dynamic, ongoing process. Community partners felt that involving them earlier and in all aspects of the research process would make for better science. Researchers were often torn between “checking the box” to meet community engagement requirements set by the funder of their research and engaging community partners in various stages of research to advance the scientific mission because of time pressure. There were strong themes around clearly defined community partner roles as well as mutual trust and transparency, as they were considered central to successful engagement of communities in research. Related, participants noted that conflict between the researchers and community partners is a familiar part of the community engaged research process. Two common sources of tension were misaligned research priorities between researchers and community partners and lack of communication about study results. Lastly, there was little agreement between researchers about how to measure community engaged research impact outcomes or which impact outcomes matter the most. Our findings support the need for training and communication tools for both community and researcher partners.

Introduction

Community engagement is defined as the process of meaningfully involving communities affected by a research finding in the research process [ 1 ]. Community engagement in research is recognized as a key process to improve the way the research is prioritized, translated, and used in a real-life setting, and can reduce health disparities [ 2 , 3 , 4 , 5 ]. Community engagement can occur across all stages of research including identifying study topics, planning and designing the study, strengthening recruitment strategies, collecting and analyzing data, and interpreting and disseminating findings. Several United States federal health agencies including the National Institutes of Health and Patient-Centered Outcomes Research Institute offer funding for community and other stakeholder engaged research, highlighting growing interest and support at the national level [ 6 ].

While evidence regarding the methods of community engagement is increasing, detailed information about the role and scope of community engagement or specific approaches to successful community engagement across the full spectrum of the research cycle is still limited [ 7 ]. Additionally, a systematic review of clinical trials that report patient engagement for the purposes of research revealed that an estimated less than 1% of clinical trials engage patients in the research process and that engagement of minorities occurred in only about a quarter of trials [ 8 ]. Growing interest in the participation and contributions of community involvement make it an opportune time to examine the key success strategies adopted by research teams and other lessons learned, and to consider the implications for future community engaged health research.

One of the goals of the National Institutes of Health Clinical and Translational Science Awards (CTSA) program is to promote knowledge translation by engaging patients and communities in the research process. The Community Engagement Program of the Johns Hopkins Institute for Clinical and Translational Research—Hopkins CTSA—hosted a forum to engage researchers and community partners in a dialogue to reflect on their past and current experiences in a variety of aspects of community engaged research . This paper reports the main themes identified from semi-structured group discussions among diverse forum participants in relation to their past and current experiences in planning, implementing, and evaluating community engaged research .

Participants and setting

Group discussions were chosen to identify norms of research teams in their conduct of community engaged research. The forum was publicized to researchers, research staff, and community partners within the greater Maryland-Washington region through email invites using existing lists and word of mouth. In order to ensure diversity in our forum participants, we also sent out personal, verbal, and email invitations to 100 researchers and community partners conducting community engaged research. The forum was also publicized during the public announcement section of meetings hosted by community advisory boards and local agencies. A total of 36 researchers and 14 community members participated in five concurrent group discussion sessions. Researcher participants consisted of research staff (e.g., research program coordinators, research assistants), post-doctoral fellows, and faculty investigators. Community participants included patient consultants and prior study subjects. About 86% of forum participants indicated that they were involved in a community or other stakeholder engaged research project at the time of the forum, and 59% had prior exposure to community engaged research.

A planning committee was formed to develop the goals, agenda and format of the forum. The planning committee included key faculty and staff from the Hopkins CTSA. Also included were members of the Johns Hopkins Community Research Advisory Council—a research review committee consisting of community residents, representatives of local community organizations, and community advocates. The planning committee met over a 3-month time period for a total of 12 meetings and developed forum goals and objectives as well as format, content, and discussion methods. The planning committee set the main goal of the forum to bring together investigators, patients, community members, and other stakeholders to share their experiences working together on research that addresses health and social issues that impact Greater Baltimore, Maryland. The 3-h forum began with opening by Director of Johns Hopkins Institute for Clinical and Translational Research, followed by the keynote presentation by a director of one of the health disparities research centers at the Johns Hopkins University. Participants were then asked to join one of five breakout groups to discuss the following topics: 1) identification and selection of community partners; 2) community partner roles and responsibilities; 3) approaches to promoting community engagement; 4) process and impact evaluation of engagement; and 5) scope of community engagement (see Table  1 for example questions). The forum planning committee grouped the participants into five breakout discussion groups based on their topical preferences, past experiences, and their expertise that were collected during registration. Following the breakout sessions, forum participants reconvened and representatives from each breakout group briefly summarized their discussion and presented the key themes of their respective breakout group discussion.

Four of the five breakout groups included both researchers and community members. The fifth group included community members only in order to maximize comfort and sharing of relevant experiences by community members. Each breakout group included 7–11 members and had a moderator to facilitate the discussion (except for the community member-only group which had two co-moderators—one community leader and one researcher), a note taker to transcribe key discussion points for the facilitation of post breakout discussion report out, and two recording devices to record discussion content. Moderators were all well-established researchers with prior and/or current community engaged projects. They had experiences in working with community members and had prior experiences in moderating group discussions. The moderators had specific instructions with a semi-structured discussion guide to follow in order to maximize the exchange of information and facilitate productive discussion. The note takers were all doctoral students who had previous experiences in qualitative research. They were all briefed and trained on the forum purpose and methods. The duration of each group discussion was 1 h. Forum participants provided written permission to audio record the discussion and transcribe notes. The Johns Hopkins Institutional Review Board considered this a quality improvement project and waived it from a full review.

Each group discussion was audio recorded and transcribed verbatim by the original note takers. Following transcription, qualitative content analysis was performed by identifying common themes across group discussions. A standard theme-based content analysis approach was used to analyze the discussion results [ 9 ]. Relevant phrases and statements from each group discussion were identified. Phrases and concepts expressed by more than one participant were considered validated and were included in the analysis, with all of the validated phrases and concepts sorted into thematic groups according to similarity. The transcriptions were then read multiple times, key phrases that provided specific information relevant to the research questions were highlighted, and key themes were identified and supported by direct quotes.

We identified four themes and eight subthemes from the forum. Main themes included: Community engagement is an ongoing and iterative process; Community partner roles must be well-defined and clearly communicated; Mutual trust and transparency are central to community engagement; and Measuring community engagement outcomes is an evolving area. Each theme with accompanying subthemes are detailed in the following section.

Community engagement is an ongoing and iterative process

Forum participants indicated that the amount of time community partners were engaged and the process of engaging community partners were different at various stages of research. The perceived importance and desire to be involved in the designing and planning stage was discussed more frequently than the desire to be involved in the other stages. Engaging in early phases of research was important to identify a problem and formulate the appropriate research questions. We identified three subthemes in relation to community engagement process: Engaging community in various stages of research, mission-driven vs. checking the box, and breadth and depth of engagement.

Engaging community partners in various stages of research

“We should be engaged in all stages of the research process” was a universal and oft-repeated sentiment within the Community partner group. Community partners felt researchers should be cognizant that community engagement is an iterative process, and that researchers’ ability to include community members and other stakeholders in all aspects of the research process is the key to success. In particular, community partners expressed that involving them earlier in the research process would make for better science:

“I think the framework is critical. The way that the research question is framed is critical. And I think that the community and the specific community, should be involved in developing the research question. Not too many folks would find fault with efforts to improve that disease or whatever may be, but if it’s not framed so that it applies … ” (Participant 6; Member of community research advisory council)

Researchers discussed actively engaging community partners in research through a series of ongoing, interactive process. Having open community forums (i.e., local forums of residents and community groups to identify issues faced by particular communities and neighborhoods and work together to address those issues) was one method to get community partners on same page, understand the needs of the community, and develop trust and rapport with the community. One researcher noted:

“I will say that the iterative process can actually be big advantage … I think that’s an incentive at least for most of the individuals that I have worked with that they really appreciate how their ideas have taken shape and how their input has been utilized. I think that can make things take a little bit more time but ultimately it is beneficial.” (Participant 1; Research investigator)

Mission-driven versus checking the box

Engaging community partners in all stages of research, however, was challenging at times. Participants discussed the importance of community engagement to advance the scientific mission. Yet, researchers stated that some grant mechanism requirements seem to have a list of community engagement requirements throughout the research study that may not always be productive to the project nor respectful of community partner time. Researchers noted that they do not want to waste community partners’ time unless there is a clear need for their feedback building on their skillset or life experiences. Valuing participant time was highlighted as one of the most difficult but important aspects of conducting research with community partners:

“I think the most challenging part of our current research is for the patients that I pushed so hard to get, for them to care about this really high level, you know, methodologic question … We don’t have monthly meetings … We try to call on them for mission driven things … We are very strategic about what we ask for [community partners] to provide input on … we don’t just waste their time just for the sake of checking a box.” (Participant 3; Research investigator)

Breadth and depth of engagement

Overall, community engagement was centered around identifying a research question or problem. Participants agreed that having communities identify research questions or problems is the most effective and pragmatic way of conducting community-based research. This process would ensure community buy-in when researchers decide to plan future studies in these same communities. One community member remarked on the good back and forth communication between community members and researchers present when she participated in a group of people living with high blood pressure that consulted researchers on relevant research questions:

“So that meant a lot to us for the fact, OK, you’re listening, and you’re actually developing something that’s going to, you know, cause I think what they did was they did something that was a consensus of what all of us had said. So we were really encouraged by it, and so when it comes time to actually do the study we want to be a part of the study, you know. ” (Participant 4; Patient).

Community partner roles must be well-defined and clearly communicated

Researchers expressed the need to consider the role of the community partners before beginning the research process—what is a community partner, the role of community partners, and the best ways to identify and recruit them. There were two subthemes directly addressing these questions: Roles of community partners and recruitment and selection of community partners.

Roles of community partners

Often, a bidirectional relationship with the community helped researchers determine the role of community partners. Participants noted that it is important to distinguish the role of community partners, as they are the liaisons that bring the researchers into the community while also acting as advisors, decision makers, and validators. Some participants called a community partner, the “mayor of the block,” the person that people in the community go to or someone who would be recognized by the community, and could “hold their own” in discussions about the community. This person would assist in translating what is going on in the community and monitor checks and balances.

The researchers in this discussion underscored the importance of clear communication about each community partner’s role to assure use of common language and clarity of roles in order to optimize the partnership and research. A research staff member talked about the importance of clarity in communication about the community partner roles by stating:

“We can be clear … I feel sometimes that there is a sense of, um people because they [community partners] don’t know what’s expected of them, feeling like they are not doing what they are supposed to be doing or that they’re we’re not...so we want to avoid that.” (Participant 9; Research staff).

Recruitment and selection of community partners

Community participants discussed the various ways they first became involved in research and collaborated with research teams. A common theme was engagement in research as a form of advocacy for a medical condition of interest. A community partner, the parent of a child with autism, shared her experience:

“I knew about clinicaltrials.gov , discovered a trial, participated in that trial and then subsequently asked to share my PHI [protected health information] for further research purposes and that was sort of the first time that I felt like I was asked by the research community to share information about my son’s autism and how it affects our family and so forth.” (Participant 11; Parent of a patient).

From the researcher perspective, it was important to first identify the type of community partner that the study requires and then to discuss who is the individual community member. Funding announcements, dissemination and implementation strategies, and knowing the skill sets of the individual community members were useful for selecting community partners. Nevertheless, difficulty identifying the right people to serve as community partners was a common challenge identified by researchers. Participants acknowledged the importance of relying on community resources and various stakeholders to identify and recruit community partners. For example, working with spiritual leaders and health departments, as well as getting to know and building trust with a community helped to identify community partners. To this end, participants noted that it would be ideal to the research team to establish presence and courtship to the community of interest and establish a relationship. Being active, involved, and partnering with community-based organizations would increase exposure and, in turn, enhance community partner engagement.

“ Having a conversation early on about what are your networks and really documenting that and understanding the kinds of networks that everyone brings to the table and how you can connect with those kinds of individuals or groups so that you can have those relationships built in advance so that when you get to the end of the process you can talk about your findings, you are not scrambling. You’ve established that.” (Participant 13; Research staff).

Mutual trust and transparency are central to community engagement

Participants noted that central to conducting community engaged research is the need to develop trust and value the unique contributions of the community partners who are invested in the project. The need to develop trust between researchers and community partners was a universal priority for forum participants. Subthemes to discuss trust to promote community engagement were: building trust, clear communication for transparency, and conflict in community engaged research.

Building trust

Participants stressed the importance of building trust long-term with the community and not coming to the partnership without consideration of community partners’ agendas. Building trust among community members and other stakeholders was also noted as an important aspect of conducting ethical and effective health research:

“That does make a huge difference … when the community sees somebody there, not with their hands out but actually wanting to be there month in and month out so when you do come calling or knocking or you need support, you have the stakeholders that relationship built that you can go to the head, the leadership of the community and they know you and they trust you.” (Participant 8; Member of community advisory council).

Clear communication for transparency

Participants underscored that researchers must make the research process as transparent as possible to community members. This included clear, honest and transparent communication with community members about funding, study findings, study team commitment to the community, duration of the study, and the overall goals of the study. Some community members felt, however, there was a lack of information from researchers to participants regarding results of the study.

“They very often don’t even let you know what, why they collected it, and how it impacted the analysis and then what they’re going to do with it. We never hear that part …” (Participant 5; Patient and member of community research advisory council).

Conflict in community engaged research

Researchers acknowledged that conflict between the researchers and community partners is a familiar part of the community engaged research process. Two sources of tension discussed by community partners were misaligned research priorities between researchers and community partners and lack of communication about study results. Researchers and community partners noted, however, that conflict was not always reported. When it was reported, it was not always clear how to manage conflict:

“I’ve been thinking a lot about [conflict] in many different [ways], but … as with muscles and anything, it is essential for growth and you need pain and destruction to move on. That’s how you know how you exercise well. When your muscles are torn and they need to regrow and repair. Otherwise you haven’t worked out enough... It’s the same for group engagement ... So how to manage [conflict] I don’t know but … that’s key.” (Participant 17; Research investigator).

Measuring community engagement impact outcomes is an evolving area

Researchers discussed a variety of community engagement outcomes they believed should be measured, such as participant attendance at meetings or activities, community partner needs, conflicts and conflict resolution, the amount of money and funding raised by community partners, and community partner self-efficacy. The researchers acknowledged it is easier to measure and evaluate short-term community engaged research outcomes like impact on study design rather than impact on health or impact of community engaged research on a community. However, they noted the lack of a commonly accepted impact measurement framework to guide the measurement of community engaged research for its impact. There was little agreement between researchers about how to measure community engaged research impact outcomes or which impact outcomes matter the most. Community engaged research might lack a commonly accepted impact measurement framework because it is an emerging field or as a result of differing goals of engagement that guide the evaluation of impact outcomes between projects. In the discussion about impact measurement, a researcher stated:

“What if we did this on the principle of justice? How would you measure justice? We get back to what you said about the goals. The goal is to incorporate justice, and that’s really why we are doing it. Can you measure something like that or do you want to be democratic. Or how would you measure whether your process was democratic and just or to some extent inclusiveness? It’s very hard to measure these types of things.” (Participant 20; Research investigator).

Researchers and policy-makers alike increasingly recognize the importance of seeking diverse and inclusive perspectives in translational research. Nonetheless, limited information is available about the role and scope of community engagement or specific approaches to community engagement across the full spectrum of the research cycle [ 7 ]. In particular, this paper offers the diverse perspectives of research investigators, staff, and community partners actively involved in community engaged research. This forum discussion allowed these diverse forum participants an opportunity to share their experiences and perspectives about the benefits and challenges of community engaged research. Our participants noted that community engagement is an ongoing and iterative process to which mutual trust and transparency are central and that the roles of community partners must be well-defined and clearly communicated for the engagement to be successful. These main themes are overall consistent with the key principles of engagement (i.e., reciprocal relationships, partnerships, co-learning, and transparency-honesty-trust) as highlighted in the recent literature [ 7 , 10 , 11 , 12 ].

Whereas all forum participants recognized the benefits of community engaged research, some of the subthemes such as engaging community in various stages of research suggest the need for closer dialogue between researchers and community partners in earlier phases of research. It was interesting to note that researchers felt engagement should happen less, once the research started; it was important for them to not waste community partners’ time by focusing on “mission driven things.” We did not find a similar concern about time burden among community partners. An essential element of community engaged research is the meaningful participation of a broadly representative group of stakeholders whose contributions are sought through all phases of the research, beginning with the planning and research question [ 12 , 13 , 14 ]. Indeed, the researcher participants in the forum noted that the most effective community engaged research involved community partners to identify a problem and formulate the appropriate research questions. Some of the data driven approaches such as the discrete choice experiment—a quantitative technique to uncover how individuals value selected attributes of a program by asking them to state their choice over different hypothetical alternatives [ 15 ]—may be useful to elicit community preferences as a way of enhancing their engagement in the early phase of research. For example, a recent systematic review [ 16 ] revealed that the discrete choice experiment, when applied to designing and characterizing therapies in the planning phase of research, resulted in increased acceptability and appropriateness.

Engagement in “all stages of the research process” came through as a strong theme within the Community partner group. Community partners in the forum appreciated the “back and forth” interaction between researchers and community members. A mixed methods study [ 17 ] showed that researchers do not routinely give feedback to community partners. Yet, community partners who receive feedback are motivated for further engagement as they feel it supports their learning and development while prompting researchers to reflect on the impact of community partners [ 17 ]. One of the ways in which researchers can provide such feedback would be to bring study findings back to the community—a lacking area in the research process, as noted by the community members. A survey of 109 community partners involved in health research with academic institutions [ 18 ] reported “research results disseminated to the community” as one of the top indicators of successful community engagement. Taken together, these findings suggest the need for culturally relevant and appropriate strategies to promote mutual feedback and better integration of community partners in the research process.

Many of the challenges discussed by the forum participants in the subthemes of mission-driven vs. checking the box, breadth and depth of engagement, and conflict in community engaged research occurred because priorities, motivations, and ways of working differed between researchers and community partners, which caused conflict and power struggles. Some of the practical issues associated with these subthemes (e.g., difficulty recruiting a set of experienced partners well connected to the target community or patient group, long-term commitment needed from partners, and time and cost limits imposed on studies) were recognized in a focus group study [ 19 ] in which problems connecting with the right person at the right time, individual member reluctance, and lack of skills and training were identified as main barriers to stakeholder engagement.

As suggested by our participants, clear and transparent communication is central to resolving potential conflicts in community engaged research. In particular, transparency in communication between community partners and researchers in terms of budget and research administrative processes [ 20 ] has been noted as key factors for improved community engaged research partnerships. Additionally, shared training opportunities for community partners and researchers may be helpful to build community partner skills about research and facilitate engagement on both sides [ 19 ]. The subtheme of recruitment and selection of community partners underscores the importance and need for the development of community capacity to facilitate more meaningful engagement in research. At the policy level, community engaged research needs to build in appropriate time, and funders should acknowledge this need as part of providing an appropriate context and budget for community engagement, to create the conditions where engagement has the potential to have a positive impact.

Forum participants considered a variety of impact assessments for their research and overall reported positive impact of community engagement on research, ensuring its appropriateness and relevance. They noted that it was difficult to have a common impact measure because of differing goals of engagement between projects. Indeed, a recent review of 68 studies addressing measures of community engagement reported that most studies used narrative descriptions of impact data [ 21 ]. Similarly, a mixed-methods study in which documents of 200 primary care research projects were examined and 191 researchers were surveyed noted qualitative reporting of community engaged research impact for study processes (e.g., designing methods or developing participant information) or on individual principal investigators (e.g., developing the grant application, managing the research, conducting the research, or the reputation of the principal investigator’s institution) [ 22 ]. A qualitative investigation [ 23 ] in the United Kingdom also revealed diverse views among stakeholders on what to measure and how to measure their impact. Taken together, the evidence base as to what constitutes adequate impact measures of community engaged research seems evolving. The findings suggest further substantive methodological development in terms of the way in which the impact of community engaged research is measured and reported, a clearer conceptualization of the nature of “impact,” and qualitative and quantitative methods for assessment of impact [ 23 ].

There are a number of study limitations to discuss. First, this was a convenience sample that was created for the purpose of the forum. In particular, we targeted researchers and community members who were already supportive of the idea of community involvement in research. Therefore, generalizability of the findings is limited. Additionally, we did not collect detailed sociodemographic information about the forum participants. The interpretation of the qualitative data might have looked different had we had this information such as age, working status (working/retired), or other relevant characteristics (roles, past experiences, etc.). Finally, it is possible that some of the moderators and notetakers of the concurrent discussion groups may not have been independent of the participants in his/her group and might have influenced the discussion either positively or negatively. We attempted to minimize the potential bias and impact of moderators and notetakers on the nature and direction of the discussion in each group by training them prior to the forum and offering them with an interview guide.

Successful implementation of healthcare interventions relies on community engagement at every stage, ranging from assessing and improving the acceptability of innovations to the sustainability of implemented interventions. In order to optimize the implementation of healthcare interventions, researchers, administrators, and policymakers must weigh the benefits and costs of complex multidimensional arrays of healthcare policies, strategies, and treatments [ 24 ]. This cannot be accomplished without meaningful engagement of key community partners throughout the research process. Challenges identified by the study teams underscore the need for enhanced community engagement training, joint planning of engagement activities, agreeing upon community partner roles and expectations in the early-planning stages of the proposed study, and increased opportunities for community participation in the research process.

Availability of data and materials

The data (anonymized transcripts from the group interviews used for the purpose of this analysis) that support the findings of this study are available from the corresponding author upon reasonable request.

Abbreviations

Clinical and Translational Science Awards

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Acknowledgements

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The study was supported, in part, by grants from the National Center for Advancing Translational Sciences (UL1TR003098 and U54AI108332). Additional funding was received from the National Institute of Nursing Research (P30NR018093) and National Institute on Aging (R01AG062649). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

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HRH conceived of the study. All authors contributed to data acquisition. HRH, AX, KJWM, SO, JC, and MB analyzed and interpreted the qualitative data regarding the community engaged research experiences and preferences. All authors read and approved the final manuscript.

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Han, HR., Xu, A., Mendez, K.J.W. et al. Exploring community engaged research experiences and preferences: a multi-level qualitative investigation. Res Involv Engagem 7 , 19 (2021). https://doi.org/10.1186/s40900-021-00261-6

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DOI : https://doi.org/10.1186/s40900-021-00261-6

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• Community engaged research
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Research Involvement and Engagement

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A Researcher's Guide to Community Engaged Research: What is CEnR?

What is cenr.

• Recommended Reading from Our Community Partners
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Introduction

This guide is an introduction to Community Engaged Research (CEnR), which is defined by the WK Kellogg Community Health Scholars Program as "begin[ning] with a research topic of importance to the community, [and] having] the aim of combining knowledge with action and achieving social change to improve health outcomes and eliminate health disparities."

Here at the Clinical and Translational Science Institute's Community Engaged Research Initiative (CERI) , Duke faculty and staff work with researchers and community members to develop relationships, improve research, and create better health outcomes in our communities, particularly for historically disadvantaged groups of people.

This guide provides resources targeted toward researchers who are looking to learn more about CEnR and implement it in their work, and includes resources about two key concepts in CEnR: cultural competence/humility and plain language .

Diagram Note: Outreach is a preparatory step that does not formally constitute community engagement. 

Foundational Principles

Principles of community engagement .

(Developed by the NIH, CDC, ATSDR, and CTSA)

Be clear about the purposes of engagement and the populations you wish to engage

Become knowledgeable about the community, establish relationships, collective self-determination is the responsibility and right of the community, partnering is necessary to create change and improve health, recognize and respect the diversity of the community, mobilize community assets and develop community capacity to take action, release control of actions and be flexible to meet changing needs, collaboration requires long-term commitment.

For more information, please consult: 

How-To Guides, Manuals, and Toolkits

Community involvement in research, what does community-engaged research look like.

• Community stakeholders on project steering committees and other deliberative and decision-making bodies
• Community advisory boards
• Compensation for the community's time and other contributions
• Dissemination of results back out to the community
• Takes time! 

What community-engaged research is NOT: 

• Focus groups or interviews
• A research methodology
• A one-size fits all approach
• Appropriate for all research
• Recruitment of minority research participants
• A relinquishing of all insight or control by researchers

Key Concept: Cultural Competence and Cultural Humility

Key concept: plain language, for more information.

The CTSI Community Engaged Research Initiative (CERI) facilitates equitable, authentic, and robust community-engaged research to improve health.  Contact CERI if you are a Duke researcher who wants more information about CEnR or to access CERI's services, which include consultation services and community studios, community partnerships and coalitions, and CEnR education and training.

For more information about the resources in this guide, contact Leatrice Martin ([email protected]).

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• Section 15. Qualitative Methods to Assess Community Issues

Chapter 3 Sections

• Section 1. Developing a Plan for Assessing Local Needs and Resources
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• Section 4. Collecting Information About the Problem
• Section 5. Analyzing Community Problems
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• Section 9. Developing Baseline Measures
• Section 10. Conducting Concerns Surveys
• Section 11. Determining Service Utilization
• Section 12. Conducting Interviews
• Section 13. Conducting Surveys
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• Section 23. Developing and Using Criteria and Processes to Set Priorities
• Section 24. Arranging Assessments That Span Jurisdictions
• Main Section

What are qualitative methods of assessment?

Why use qualitative methods of assessment, when would you use qualitative methods of assessment, how do you use qualitative methods of assessment.

Using qualitative assessment methods rather than purely data-based information is crucial to understanding many community issues and needs. Numbers work well to show comparisons, progress, an statistics of community efforts, but they cannot express motives, opinions, feelings, or relationships. This section discusses how to use qualitative assessment methods and when to implement them into communtiy planning.

Qualitative methods of assessment are ways of gathering information that yield results that can’t easily be measured by or translated into numbers. They are often used when you need the subtleties behind the numbers – the feelings, small actions, or pieces of community history that affect the current situation. They acknowledge the fact that experience is subjective – that it is filtered through the perceptions and world views of the people undergoing it – and that it’s important to understand those perceptions and world views.

There are two major scientific ways of gathering information: quantitative methods and qualitative methods. Quantitative methods are those that express their results in numbers. They tend to answer questions like “How many?” or “How much?” or “How often?” When they’re used to compare things – the results of community programs, the effects of an economic development effort, or attitudes about a community issue – they do it by subjecting all of the things or people they’re comparing to exactly the same tests or to the same questions whose answers can be translated into numbers. That way, they can compare apples to apples – everything or everyone is measured by the same standard. Quantitative measures are often demanded by policy makers; they are considered trustworthy because their results can be measured against one another, and because they leave less room for bias.

Qualitative methods don’t yield numerical results in themselves. They may involve asking people for “essay” answers about often-complex issues, or observing interactions in complex situations. When you ask a lot of people for their reactions to or explanations of a community issue, you’re likely to get a lot of different answers. When you observe a complex situation, you may see a number of different aspects of it, and a number of ways in which it could be interpreted. You’re not only not comparing apples to apples, you may be comparing apples to bulldozers or waterfalls. As a result, researchers and policymakers sometimes see qualitative methods as less accurate and less legitimate than quantitative ones. That can be true, but, as we’ll see, if qualitative methods are used with care, they can also yield reliable information.

Qualitative and quantitative methods are, in fact, complementary. Each has strengths and weaknesses that the other doesn’t, and together, they can present a clearer picture of the situation than either would alone. Often, the most accurate information is obtained when several varieties of each method are used. That’s not always possible, but when it is, it can yield the best results.

There are a number of qualitative methods that can be used in assessment of issues or community needs. We’ll list the major ones here, and look at them in more detail later in the section.

They include:

• Individual interviews . These may be structured interviews, where the questions are determined beforehand, or unstructured conversations that are allowed to range wherever the interviewee wants to go in relation to the general topic. Even in structured interviews, there may be room for both interviewers and interviewees to pursue topics that don’t relate directly to answering the original questions. The difference, however, is that in a structured interview, all those questions are formally asked, and the interviewer does her best to make sure they’re answered.
• Group interviews . These are similar to individual interviews, but involve two or more interviewees at a time, rather than one. (Sometimes, these are unexpected – the interviewee’s mother and sister are present, and insist on being part of the conversation.) Group interviews have some advantages, in that interviewees can act as a check on one another (I remember that happening in a different way…), and stimulate one another’s thinking. At the same time, the interviewer has to be somewhat of a facilitator, making sure that no one person dominates, and that everyone gets a reasonable chance to speak.

A special case of group interviewing is a focus group . This is a group of about 6-10 people, led by a trained facilitator, assembled to answer a specific question or questions. An effort is sometimes made to make sure that group members don’t know one another, so that social pressures won’t influence them. If trained facilitators are available, focus groups can be a good way to get accurate information about an issue.

• Observation . Here, someone actually goes and looks at a place or event, watches situations or interactions, or takes part in the life of the community or a population while recording what he finds as a result.
• Community or other large meetings . These meetings allow a range of people a chance to express their opinions and react to others’. They can draw on a large pool of opinions and knowledge at one time, and uncover disagreements or differences that can then be discussed.
• Interpretation of records, transcripts, etc. This can range from qualitative analysis of quantitative data (like the assumption of the researcher in the introduction to this section that people who are doing well won’t be interested in an adult education program), to using quantitative data as a jumping-off point for qualitative assessment, to case studies (detailed examinations of individual cases). The last are not always useful in assessing community issues or needs, but they can be very effective in convincing policymakers or funders of the importance of those issues and needs.

Many types of qualitative information are turned into numerical results, although not always accurately. The transformation may miss important details, or the information may simply be too complex to fit easily into numerical constraints, unless you can create a computer model or similar number-based framework that has the capacity to take in an enormous amount of variety. There are many software programs – NVivo and Atlas.ti are fairly well-known, but there are many others, including some freeware – that are intended expressly for analyzing qualitative data.

Since qualitative methods give you results that are not always easy to compare, or even to check for accuracy, people who want hard and fast evidence often see them as suspect. In fact, both quantitative and qualitative measures are important and necessary, depending on the situation. When you’re assessing community issues, as we’ve discussed, you’ll often get closest to the complete picture by using both. The problem is convincing those who need to be convinced – policymakers, funders, etc. – that your qualitative measures are reliable.

There is a debate in the research community about how to judge qualitative methods. Some say they should be evaluated by the same standards as quantitative methods. Others maintain that, because they are intrinsically different from quantitative methods, qualitative methods need a set of standards that take into account their philosophical base and the kind of information they yield.

The British government, for instance, has developed a framework for demonstrating qualitative reliability, which includes a set of 18 questions that a qualitative assessment or study should be subjected to (see Tool #1 ).

Guidelines that can help you argue for the reliability of your qualitative assessment include:

• Report accurately and completely . Whether you’re interviewing, observing, or engaging in some other technique, you should faithfully record such details as the time and place of your activity, who was involved, what the situation was, etc. In that way, you can see similarities and differences, and make comparisons where they’re appropriate. The recording of interviews, observations, and other information should be as accurate and nearly complete as possible (e.g., word-for-word for interviews).
• Frame the right questions, and direct them appropriately . Occasionally, it works to go fishing for information, i.e. to start without any idea of what you want to find out In most instances, however, you should know what the important questions are, and where you need to look for answers. The clearer you can be – and the clearer it is that the questions you’re asking will lead to real understanding and effective action – the more credibility your inquiry will have.
• Use qualitative methods specifically to gain information you can’t easily get from quantitative methods . You can quantify how many members of a specific minority live in a particular neighborhood. It’s much harder to quantify a clear understanding of how well they get along with their neighbors, and why.
• Use the method(s) that can best help you answer the questions you’re asking . If you want to know the state of vacant lots in a city, you’re less likely to determine it by asking people than you are by going and looking at the lots themselves. On the other hand, you usually can gain more information about people’s opinions through talking to them than you can from observation.
• Sort out your own and others’ subjective feelings and comments from objective reality, and try to make sure that your findings are objective . It’s easy to get caught up in the passion of interviewees’ opinions, or in your own response to particular conditions. If you want your findings to be reliable, you have to screen out as much of the subjective as possible from what you find and record. (One way to approach this issue is to have more than one person record and analyze each interview or observation, and then to check on how well they agree, both in their recording of the data and in their interpretation.)

Something that’s objective – an observation, statement, opinion, research finding, etc. – is based on reality as it actually is. Scientists, for instance, aim to be objective, and to understand the way things really are, rather than the way the scientists or others want them to be, or think they might be. A subjective observation, statement, opinion, or research finding, on the other hand, is based on the thoughts and assumptions of the person issuing it. A researcher may be so appalled by the conditions in neighborhoods where violence is rampant that she may begin to feel that violence is in fact the only rational response, and slant her research in that direction. Especially in community assessment, objectivity is vitally important. Objectivity in looking at the community will help you understand how to most effectively address issues, maximize and use assets, and solve problems. Understanding your own subjective reactions – to difficult conditions, to particular individuals, to cultural practices – will help you to screen them out, thereby increasing the reliability of your findings.

The basic reason to use qualitative methods is that there are some kinds of questions and some dimensions of community assessment that can be better addressed by them than by quantitative methods. The methods you use should be determined by the questions you’re asking. Since it may be hard to convince policymakers and others that qualitative methods are useful, however, why bother to use them at all? Some of the major reasons:

• They answer some questions that quantitative measures can’t. Quantitative methods may tell you how many people do a certain thing, but they’re unlikely to tell you how or why they do it. Qualitative methods can better answer the how and why questions, and also provide other information in the process.
• They connect directly with the population and the community with which you’re concerned. In assessment, the best sources of information are those closest to what’s being assessed: they experience it more than anyone else. Qualitative methods generally go directly to those sources with more complex questions than quantitative methods.
• They can get at certain underlying realities of the situation. Once again, quantitative methods often don’t answer “why?” questions, while qualitative methods can tell you about the history of the community or issue, who the significant supporters and opponents of various ideas are, whom people in the community listen to, etc. In an assessment situation, these can be crucial pieces of information.
• They can involve the population of interest, or the community at large, in helping to assess the issues and needs of the community. This participation fosters a sense of ownership and support for the efforts.
• They often allow for a deeper examination of the situation or the community than quantitative methods do. Quantitative methods, although helpful, can tend to put people or events in specific categories, ask for yes-no or multiple-choice answers, often eliminating complexity. Qualitative methods allow for following promising directions (“Why do you say that?”), and can lead to the discovery of important information that quantitative results wouldn’t have touched on.
• They allow for the human factor. While the information obtained through qualitative methods is often subjective, it is also often identified as such, and can be analyzed accordingly.

Clearly, there are times when quantitative research will give you the information you need. So when do you use qualitative methods? It depends to a great extent on the question you’re asking. (The first four situations below are based on a USAID guide to using rapid appraisal methods, Performance Monitoring and Evaluation Tips .)

• When what you need is qualitative, descriptive information . Particularly in an assessment situation, what you’re often looking for is descriptive or analytical information that has little to do with quantitative measures. The type of information provided by qualitative methods is often exactly what you’re looking for in community assessment to decide on next steps.
• When you’re trying to understand the reasons and motivations for people’s behavior, or how they operate in particular situations . Why don’t people take advantage of human service programs for which they’re eligible? What are the differences in the ways people of different cultural backgrounds respond to services? These are the kinds of questions you’re likely to want to answer in a community assessment, and they often can’t be answered quantitatively.
• When you’re analyzing quantitative data. As mentioned above, much quantitative data can be analyzed using qualitative methods.

An odd set of numbers – a community that’s decidedly low-income, but where a vast majority of people own their own homes, for instance – might be the springboard for a qualitative examination of why this is so. A number of reasons are possible: The community is largely elderly, and people are living in long-since-paid-for houses they bought 40 or more years ago, when their income was higher and housing was less expensive. One or more local banks have made it a priority to help people buy houses, and provide low-interest mortgages and other subsidy programs to further that goal. While they may be low-income, the members of the community nonetheless scrimp on everything else in order to put away money for a house. This is often the case among immigrants from certain cultures, where people are willing to live very simply for many years in order to save for property and education. The community has been “written off” because of its substandard housing, dangerous streets, and lack of services, and houses as a result are ridiculously cheap. A combination of factors, some of which may not be listed here. By and large, quantitative methods won’t easily tell you the reasons for this unusual situation, but qualitative methods will.

• When you’re trying to develop suggestions and recommendations . Again, this is often the primary purpose of community assessment. How should you design a program or initiative to accomplish a major community goal or deal with an issue? What will people respond to? Qualitative data may give the best information here, or may be used in addition to qualitative information to provide a complete picture on which to base your strategy.
• When you want to involve the community in assessment as directly as possible . Involving community members directly leads to ownership and support of initiatives, and is also likely to generate the best and most effective solutions. Qualitative assessment methods, for the most part, collect information directly from community members themselves, and allow them to fill in the details as much as they can. By and large, being interviewed is more likely to leave someone feeling like part of the process than filling out a survey.
• When you’re doing community-based participatory research (i.e., involving the community directly in planning and implementing assessment). Community-based participatory research often relies greatly on qualitative assessment methods.
• When quantitative data are unavailable or unobtainable.
• When you don’t have the capacity to use quantitative methods . You may not have the proper training, the software or hardware that will make quantitative assessment useful for you, or the time to use quantitative methods properly.

Now that you’re convinced of the importance of using qualitative methods of assessment, how are you going to do it? There’s seldom one right way to do anything, but we’ll offer some steps to take in using qualitative methods, including some guidelines for doing interviews and observations, the two most common methods. (Most of these guidelines hold equally for using quantitative methods as well.)

Start by deciding what it is you want to know.

You may remember that this is also one of the guidelines for qualitative reliability. It may seem elementary, but it doesn’t happen anywhere near as often as it ought to. The importance of deciding what you want to know is that it determines the character of your assessment – what kinds of questions you ask, whom you ask them of, how you’ll go about it, etc. Without that minimal amount of structure, you’re likely to wind up with a confused and unorganized mass of information.

There are many ways to approach a community assessment, and, consequently, many questions you might choose to start your assessment with. You might even use more than one, but it’s important to be clear about exactly what you’re looking for.

Some possibilities:

• What is the most serious issue – either general or specific – the community faces (i.e., what should we turn our attention to?
• What services are most needed in the community? Who most needs them?
• Are people taking advantage of services that currently exist?
• What are the community’s significant assets? How can they be strengthened?
• Are there forces working against the good of the community that should be opposed? (You probably wouldn’t be asking this question unless you thought there were, and had some idea who or what they might be.)
• Who ought to be involved in a prospective coalition or initiative?

Choose the method best suited to finding the information you’re looking for.

If you want to learn about people’s public behavior, you would probably use direct observation. Observing mothers and children in a clinic waiting room, for example, might give you information about the mothers’ anxiety levels or child-rearing practices.

If you want to know people’s opinions or how they feel about issues, some type of interview would be appropriate.

Once you’ve chosen the right method, it’s important to carry it out properly. Be aware of what you can do with the resources you have. You can’t conduct thousands of interviews in a large city, for instance, without considerable money. If you’re a cash-strapped nonprofit, you might look for a grant to fund your interviews, or you might confine your assessment to one neighborhood. Perhaps you’d mobilize volunteers to conduct interviews, or interview groups rather than individuals. It’s better to do a limited community assessment well than a large one badly. In choosing your method, be aware also that, in some cases, quantitative methods may be more appropriate and more likely to tell you what you want to know.

Choose the people who will gather the information, and, if necessary, train them.

With qualitative methods, where contact is often personal, the question of who carries them out can be very important. Academics or others who are perceived by community members as “the other,” whether because of their behavior, their speech, or simply because they’re outsiders, may find it hard to gather accurate and complete information from a population that’s very conscious of class or cultural differences. Often, it makes more sense to train members of the population or others who are known and trusted by – or at least familiar to, in their behavior, dress, and speech –those who are being asked to contribute their opinions and observations.

Data collectors should be fluent in the language and culture of those they are interviewing. If you’re assessing commercial activity in a Hispanic neighborhood, you’ll miss most of what’s really happening unless you understand both the Spanish language and the normal ways in which Hispanic (or Dominican or Mexican or Puerto Rican) customers and merchants relate to one another.

If you recruit members of the community or of a specific population to do qualitative information gathering – because they relate to the population better, because they speak the language, because you’re engaged in a participatory effort, or simply because you think they’ll be good at it – you should provide them with training to make sure that the results they come up with are reliable. Depending on what kinds of methods they’ll be using, some of the elements of a training might be:

• What to record and how : It may not be obvious how important it is to record the time, place, details, and circumstances of an interview, observation, focus group, or larger meeting It may also be necessary, depending on a trainee’s experience, to learn to use a recorder or video camera, and/or to learn how to take efficient notes without losing the thread of the conversation or missing important points in an observation.
• Interview techniques , as well as exactly what purpose an interview serves, and how it fits into the larger assessment picture. The more clearly an interviewer understands not just what to do and how, but why she’s doing it, the better she’s likely to be at drawing out the information she’s seeking.
• Observation techniques : As with an interview, an observation will be far more useful if the observer understands not just what to do and how to do it, but exactly why he’s doing it, and how it will be used.
• Training in other methods : Focus groups, for instance, require specific skills and techniques.
• Training in how to think of themselves as researchers : Like those engaged in community-based participatory research , information gatherers should understand how researchers operate. Objectivity, attention to detail, curiosity, and the continuous processing of information in order to generate the next question or observation are all part of the investigative mindset, which they should be encouraged to develop.

Determine from whom or from where you need to gather information.

It may be that you want to hear from all sectors of the community, but some issues or circumstances demand more specific informants. Some possible interview subjects may be public officials, members of a specific population or cultural group, people from a particular geographic area, or people with certain characteristics (parents of young children, individuals with disabilities, males 18-24, people with high blood pressure).

Knowing whom you need to ask extends to any method in which you talk directly to people – focus groups, large community meetings, etc. Focus groups used by marketers are chosen extremely carefully, for example, with age, gender, income, place of residence, and even such factors as favored leisure activities considered.

Observation may or may not involve people. If it does, the question may not be whom you want to observe, but rather what activity or situation you want to observe. If it’s general – what kinds of street activity take place in various neighborhoods, how people use a public park – it’s not necessary to focus on a particular population, but rather on the place. If it’s more specific – back to commercial activity in that Hispanic neighborhood – you’ll need to be in the right place at the right time.

Gather the information.

Now it’s time for you or the people you’ve chosen to go out and collect the qualitative information you need.

As mentioned above, interviews can be structured or unstructured. In a strictly structured interview, the same questions in the same order are asked of everyone, with relatively little room for wandering off the specific topic. Semi-structured interviews may also be based on a list of specific questions, but – while trying to make sure that the interviewee answers all of them – the interviewer may pursue interesting avenues, or encourage the interviewee to talk about other related issues. An unstructured interview is likely to be more relaxed – more like a conversation than a formal interview.

There are advantages and disadvantages to each approach. A structured interview may make the interviewee focus in on the questions and the interview process, take it more seriously, and thus provide excellent information. Because everyone is interviewed in the same way, a structured interview may be – or at least may look – reliable. It may also make an interviewee nervous, emphasize the differences between him and the interviewer, and lead to incomplete or less-than-truthful answers.

A semi- or unstructured interview may allow the interviewee to be more relaxed, and thus more forthcoming. It also leaves room for pursuing a topic that’s not directly related to the formal list of questions, but that might be important or even crucial. At the same time, because it can be far-ranging, a semi- or unstructured interview – particularly one that doesn’t start with a list of questions – is, or appears, less reliable than a structured one. It also, in the hands of an inexperienced or indecisive interviewer, may allow an interviewee to get sidetracked and never get back to the original questions.

What kind of interview you use depends on the nature of the information you’re looking for, the needs of the people you’re interviewing (e.g., whether comfort is more important than structure), and your own comfort. The author has conducted all three types of interviews, and has found that semi-structured interviews – having clear questions and goals for the interview, but conducting it in an informal way, with room for pursuing tangents and some simple friendly conversation – is generally productive. The following guidelines for interviewing reflect that view.

• Ask the interviewee to choose the space . You might give him a range of suggestions – his home or workplace, the office of a human service agency, a neutral space, such as a café or a park – and go with his choice. The more comfortable he is, the better and more informative the interview is likely to be.
• Choose your clothes for the comfort of the interviewee . In general, your clothes and hers should be similar: if she’s in jeans and a t-shirt, you shouldn’t be in a suit; if you’re interviewing a business executive at her office, you should be wearing a suit. Clothes send powerful messages, and the message you should be sending here is “We’re from the same planet; you can talk to me.”
• Talk beforehand with the interviewee if you’re planning to record or photograph the interview . Get permission before you show up with equipment It’s common courtesy, and it’s less likely to start the interview off awkwardly .

If the results of the interview are likely to be published, even if the interviewee will be anonymous, you might want to get a signed “informed consent” form, indicating that the interviewee understands the purpose of the interview, and gives permission for the material to be published or used in other ways.

• Record carefully the time, place, circumstances, and details of the interview . This includes a description of the location (the neighborhood as well as the space, if you’re interviewing a community member), other people present, any distractions (kids, pets, TV), other factors influencing the interview or the situation. Include a general description of the interviewee (married Hispanic woman, age 25, three children aged 6, 4, and 1).
• Think out and frame your questions carefully, and ask directly for the information you’re seeking . Memorize your basic questions (not necessarily word-for-word, but know what they are), so that you refer to notes as little as possible. Make your questions clear and unambiguous, so that questions aren’t vague or difficult to understand.
• Ask open-ended questions . These are questions that require an "essay" answer, rather than a yes-no response. For example, instead of asking "Did you enjoy being in the program?" you might ask "What was participating in the program like?" Try to give people the chance to answer as fully and thoughtfully as possible.
• Probe . Ask follow-up questions to get at what people are really saying, or to keep them talking about a topic. ("Why did you like it when the teacher asked your opinion?") Don't be afraid to pursue what may seem to be a sidetrack. Sometimes the best or most important information lies off the beaten path.

Some interviewees can manage one-word answers to nearly any question. They might answer "What was participating in the program like?" with “Good.” Don’t be afraid to probe these answers. “What does that mean?” or “How was it good?” might get you a flood of information. If it gets you another one-word answer, keep probing, unless you sense that the person is getting angry or frustrated. Then it’s probably time to move on to the next question, and hope that there’ll be an opportunity to return to this one for a fuller explanation. But be aware that some people are simply quieter – or less reflective – than others. You may never get much more than one-word answers from them.

• Don't cut people off too quickly . Their stories, or what you can read between the lines, may give you information as important as what they tell you directly.

At the same time, be aware when they’ve strayed too far from the topic. There’s a Mark Twain story that consists of the voice of a man telling an anecdote about a three-legged dog. Every other word reminds him of something else – another story – and he gets continually sidetracked, never finishing the story of the dog, or any of the others, either. Beware the Curse of the Three-Legged Dog: gently but firmly direct people back to the topic if they get too far afield.

• Confirm what you're told by checking with others to the extent that you can . Remember that you're getting people's perceptions, which aren't always the same as objective reality. In Rashomon, a film by the great Japanese director Akira Kurosawa, an incident is described from the perspectives of four participants, each of whom sees it totally differently. In fact, the phenomenon of Rashomon lurks everywhere; get everyone's side of the story.

Group interviews are both similar to and different from individual ones. The basic guidelines – being clear what you’re asking, open-ended questions, probing, etc. – still hold, but the group brings its own dynamic to the situation. The interview becomes more of a group discussion , and the interviewer’s concerns must extend to making sure that everyone gets heard, reining in individuals who dominate the discussion, and keeping the focus on ideas and information, rather than personalities. As with other methods, group interviews have advantages and disadvantages. The former include using the energy of the group to generate more information than might otherwise be forthcoming. Members may stimulate one another to come up with more and more useful material, as their thinking is prodded by the memories and conclusions of others. They can also act as a check on the accuracy of the information provided. In addition, the presence of other, often familiar, interviewees may help to break down shyness or nervousness, and create a relaxed atmosphere in which everyone feels comfortable talking. (The skills of the interviewer at making people comfortable – at least partially by being comfortable herself – are important here.) With these potential positives come the possible negatives of conflict, antagonism, or dislike among group members, as well as other negative feelings or history that can disrupt or twist discussion and make an interview all but useless. There are also problems that can arise from members of the group being too friendly: they may spend too much time in chit-chat, and have trouble focusing on the questions at hand. Group interviews may be useful when resources – and, as a result, interviewers – are limited, or when there are a large number of people who should be, or would like to be, interviewed. Groups probably shouldn’t be much larger than five or six, and interviewers should have, or be trained in, basic group facilitation skills .

Observation

What do we mean by “observation?” For our purposes, there are essentially two kinds: direct and participant observation.

Direct observation is the practice of examining or watching places, people, or activity without interfering or taking part in what’s going on. The observer is the proverbial fly on the wall, often unidentified, who does nothing but watch and record what she sees and/or hears. A direct observation to see how people use a public park, for instance, might consist of one or more observers simply sitting in one place or walking around the park for several hours, or even several days. Observers might come back at different times of day, on different days, or at different times of year, in order to understand as much as possible of what goes on in the park. They might occasionally ask questions of people using the park, but in as low-key and unobtrusive a way as possible, not identifying themselves as researchers.

Some kinds of direct observation – those where people are observed in situations they think are private – have the potential of violating privacy. In these instances, ethics generally demands that the observer obtain the permission of those being observed . In laboratory schools, for instance, where teachers are trained and new educational ideas tested, classes are often observed from behind one-way mirrors. In such cases, both the teachers and the parents of the students are generally informed that such observation may happen, and are asked to sign consent forms. They don’t know exactly when observation is taking place, but they understand that it’s part of the laboratory school environment, and are willing to allow it in order both to improve individual teachers’ skills and to foster the development of better educational methods.

Participant observation involves becoming to some extent part of the life of the people you’re observing – learning and taking part in their culture, their celebrations and rituals, and their everyday activities. A participant observer in the park above might introduce himself into the activities he observes – a regular volleyball game, winter cross-country skiing, dog walking, in-line skating – and get to know well the people who engage in those activities. He would also monitor his own feelings and reactions to using the park, in order to better understand how its users feel about it. He would probably ask lots of questions, and might well identify himself as a researcher.

An effective participant observer may take a long time (in some cases, years) to establish himself in this way. There are exceptions to this rule, of course. Some marketing firms and corporations employ trend-spotters as participant observers. Young, hip, and stylish themselves, these observers are able to identify and mingle with adolescent and young adult trend-setters in brief interactions, and determine what products, styles, and behaviors are likely to catch on soon with young people in general. You may able to do something similar, but it helps greatly if you’re already part of the group that you’re interested in observing, or if the group, like public park users, can include anyone.

Both direct and participant observation can be useful in community assessment. A participant observer in that situation is likely to be a member of the group being observed, because of the length of time it can take to establish an outsider as a participant observer. Direct observation is probably more common as an assessment tool.

Regardless of its type, your observation should be conducted so as to be reliable.

Some guidelines for reaching that goal:

• Think carefully about the questions you want your observation to answer . You may be looking at people’s behavior or interactions in a given place or situation, or the nature of social, physical, or environmental conditions in a particular place or circumstance. If you’re clear about what you want to find out, you can structure your observation to get the best information.
• Where and whom should you observe to answer these questions ? You wouldn’t normally look for evidence of homelessness in the wealthiest neighborhood in town, nor would you observe the residents of an Asian neighborhood to find out something about the Hispanic population.
• When and for how long should observation take place ? Observing commercial activity downtown on Sunday morning won’t get you a very accurate picture of what it’s actually like. You’d need to observe at both busy and slow times, and over a period of time, to get a real idea of the amount, intensity, and character of commercial activity.

What should you observe and record? That depends on the questions you’re trying to answer, but some basics include:

• The physical characteristics of the setting(s), including weather, if outdoors.
• The time of day, week, and year.

Clothing reflects the way people choose to present themselves to the world. A mohawk haircut, piercings, and black clothes represent an attitude and, to some extent, a world view, not just a fashion statement. The same is true for an expensive suit, or for an outfit of jeans, wool shirt, and hiking boots. Paying attention to such details can increase both your understanding and the reliability of your observation.

• The activities, events, and/or places or circumstances observed, and a description of each.
• The nature of interactions among people.
• People’s apparent attitudes toward a place, situation, activity, or event – positive or negative, happy, confused, angry, disappointed, etc.

At a neighborhood festival, for instance, an observer could be watching from a window high above the street, from a position just at the edge of the crowd, from within the crowd and the festival goings-on, as a participant in a festival activity, or even as a festival volunteer or organizer. What she would see and hear, what she would experience, and the information she would obtain would be different from each of these viewpoints.

• The observer’s own responses and attitudes, including the physical and psychological comfort of the observation. This should be separate from the recording of the observation itself, and, in the ideal, should not influence the objective recording of what was observed.

How do you record observations? That depends on the nature of the observation and on your resources. Video recording, unless it’s done from a concealed spot, or in a situation where such recording is expected (a tourist site, or that street festival, for example), can change people’s behavior or put the observer under some suspicion. Audio recording is much less obvious, but also provides less information, unless it’s specifically sound information that you’re seeking. In most cases, recording would be done with a notebook and pencil or with a laptop computer. If recording during the observation would be disruptive or out of place, you’d probably wait till after you had left the situation – but as soon after as possible, so as not to forget or confuse details.

Analyze the information.

Once you’ve gathered information by whatever qualitative method, you have to figure out what it tells you . Some of that will be obvious: if you’ve been interested in who uses that public park we were talking about earlier, and your observation tells you that it’s mostly young people, you have an answer to your initial question . Your next questions may be why other groups don’t use the park as much , and whether the fact that it’s largely used by young people keeps others away. When you’ve answered those questions, you may have generated others , or you may have a basis for planning a campaign to get more people using the park.

Make and carry out a plan to address the issue or problem you’ve identified or were concerned with.

The final step here is to use the information and analysis that came from your use of qualitative methods to change the community for the better. All the assessment in the world is useless if it doesn’t lead to some action that’s meant to create positive change.

Qualitative methods of gathering information – methods such as interviews, observation, focus groups, and community meetings that don’t always yield results that can be reduced to numbers, or that are used to capture a level of information difficult to get with quantitative methods – are often extremely useful in community assessment, especially when used together with quantitative methods, which do give numerical results. Qualitative methods can get at the things that numbers don’t, such as the reasons for people’s actions, or community history. They can help to identify community issues and needs, and provide a basis for planning community efforts that lead to long-term change.

Online Resources

The Action Catalogue is an online decision support tool that is intended to enable researchers, policy-makers and others wanting to conduct inclusive research, to find the method best suited for their specific project needs.

Chapter 6: Research Methods in the "Introduction to Community Psychology" describes the ecological lens in community research, the role of ethics, the differences between qualitative and quantitative research, and mixed methods research.

Harnessing Qualitative Data to Advance Health Equity is a presentation on how data has the potential to both paint an accurate picture of what sexual and intimate partner violence prevention practitioners and advocates know is happening on the ground  and  convey that reality to policymakers.

Qualitative assessment of the Washington State Department of Social and Health Services goals provides a summary of the results of focus groups conducted to explore the public's perception of relevant issues. This is a summary, but you can also download a PDF of the full report.

Qualitative Methods  provides brief descriptions of four standard qualitative research methods: participant observation, direct observation, unstructured interviews, and case studies.

Qualitative Research Methods  is a compendium of sites with papers, links, etc. to qualitative research methods.

Print Resources

Berg, B. (2007),  Qualitative Research Methods for the Social Sciences  (6th edn.) Boston: Allyn and Bacon.

Berkowitz, W. (1982).  Community impact . Cambridge, MA: Schenkman Publishing Company, Inc.

Why Community Engagement Matters

Citizens are ‘engaged’ when they play a meaningful role in the deliberations, discussions, decision-making and/or implementation of projects or programs affecting them. Accordingly, organizational and government leaders need to broaden the way they see their responsibilities to include roles as facilitator, supporter, collaborator, and empower of citizens and stakeholders.

This change requires letting go of some of the traditional reins of power and trusting that citizens can and will effectively engage in the issues. The result is a partnership(s) that is nearly always healthy for a community and can more effectively address the issue or problem.

While research regarding the benefits and importance of community engagement varies, several key opportunities are commonly identified. Among these are:

• Increase the likelihood that projects or solutions will be widely accepted. Citizens who participate in these processes show significant commitment to help make the projects happen.
• Create more effective solutions. Drawing on local knowledge from a diverse group creates solutions that are practical and effective.
• Improve citizens' knowledge and skills in problem solving. Participants learn about the issues in-depth. Greater knowledge allows them to see multiple sides of the problem. Citizens can practice communication and decision-making skills.
• Empower and integrate people from different backgrounds. Groups that feel ignored can gain greater control over their lives and their community. When people from different areas of the community work together, they often find that they have much in common.
• Create local networks of community members. The more people who know what is going on and who are willing to work toward a goal, the more likely a community is to be successful in reaching its goals.
• Create several opportunities for discussing concerns. Regular, on-going discussions allow people to express concerns before problems become too big or out of control.
• Increase trust in community organizations and governance. Working together improves communication and understanding. Knowing what government, community citizens and leaders, and organizations can and cannot do may reduce future conflict.

(Adapted from Bassler et al, 2008).

In addition a well-designed engagement effort allows you to identify and understand:

• Differing values and priorities
• Differing frames, or ways citizens view the community or a particular project
• Various alternatives and consequences
• Perceptions of benefits and risks
• Different ideas and potential solutions and actions
• The characteristics and challenges of your " wicked " issue

Bassler, A. et al., " Developing Effective Citizen Engagement: A How-to Guide for Community Leaders ." Center for Rural America , 2008.

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'Our team's research contributes directly to scalable solutions for global environmental issues'

5/17/2024 A&S Communications

Economics Vancouver, British Columbia

What was your favorite class and why?  

One of my favourite classes would have to be AEM 4485: Economics of Food and Malnutrition with Professor John Hoddinott. Grounded in Prof. Hoddinott’s own extensive research, this class directly applies foundational economic theories and models to explain the critical role of food in international development. The interdisciplinary nature of the course attracted a diverse student body too. I had the opportunity to collaborate with peers from various academic paths and career journeys. The blend of theoretical knowledge and practical expertise was instrumental in enriching my understanding of the intricate relationships between economic policies and global nutrition outcomes. 

What is your main extracurricular activity and why is it important to you?

My main extracurricular activity is leading the aquaculture subteam within the Cornell University Sustainable Design project team. This role has been pivotal for me since I joined in my sophomore year. It offers the unique challenge of leading a diverse team to design, build and test solutions to overfeeding in commercial aquaculture. Our team also works alongside Dr. Eugene Won, giving us the opportunity to engage in meaningful research, contributing directly to scalable solutions for global environmental issues. This work aligns closely with my academic and personal interests, making it a deeply rewarding part of my undergrad experience. 

What Cornell memory do you treasure the most?         

Among the countless cherished memories from Cornell, the most transformative one is my involvement with the Cornell Einhorn Center’s Vietnam Adverse Childhood Experience Pathfinder project (VACEP). From early morning Zoom meetings writing literature reviews with my teammates at VinUniversity to spending three weeks on-site in Hanoi, engaging with community members and local NGOs, this experience profoundly shaped my academic interests and personal growth. It highlighted the importance of community engagement, the impact of creating platforms for sharing diverse perspectives and the potential positive outcomes that can be achieved by empowering others to act with courage, curiosity and humility. There’s something uniquely enriching about being immersed in a foreign environment with a diverse yet unified cohort — all driven by a desire to serve a public purpose. 

How have your beliefs or perspectives changed since you first arrived at Cornell? 

As a freshman, I would have thought it impossible to navigate my way through three different majors and finally declare one at the end of my junior year. However, this path, while seemingly chaotic, unfolded naturally, revealing its purpose with each transition. I began my undergraduate journey in development sociology, driven by a desire to understand the sociological theories that underpin challenges in international development. However, I soon realized that I craved a more hands-on, practical approach to these issues. Transitioning to global development, my coursework and research deepened my appreciation for the economic and analytical methods necessary to tackle the interdisciplinary nature of development challenges. Consequently, I decided to build a robust quantitative foundation by declaring a new major in economics, grounding my diverse interests in a strong analytical framework. My time at Cornell has taught me that the pursuit of knowledge is not a linear journey but a dynamic exploration that requires flexibility, perseverance and an open mind. Embracing uncertainty has led me to some of the most fulfilling outcomes. Each change in my academic focus was not merely a switch in discipline but a step towards a more comprehensive understanding of how I can contribute to the world. 

Every year, our faculty nominate graduating Arts & Sciences students to be featured as part of our Extraordinary Journeys series.  Read more about the Class of 202 4.

New research initiative tackles pressing global development issues

'Science has a wide community and you can always find people to help'

'I want to keep learning, about people, about culture, about myself'

'Entertain the notion that your "requirements" are actually opportunities'

'I felt more empowered as a student and a woman'

5/17/2024 A&S Communications

Anya English

Psychology Harrisburg, Pa.

What is your main extracurricular activity and why is it important to you?

As the Programming and Outreach Coordinator at Cornell’s Gender Equity Resource Center from my sophomore year to senior fall, I developed reproductive health resource guides, built community relationships, and created programs for women-identified students. The highlight of my time at the center was creating the “No, You’re Not Overreacting” series. The title was an acknowledgment of the reality that being a student is challenging, and being a woman of color adds an extra layer of difficulty. So, the message was clear: you’re not overreacting, and let’s talk about it! The program offered a communal space for women of color to address their distinct challenges and experiences and have nuanced discussions on topics like the intersections of identity and joy. Our program held monthly events centered around a different sub-theme like deconstructing beauty standards, building community, self-care, and first-year acclimation to campus life. It was a privilege to support my community, especially in guiding first-year students by sharing resources and offering any insights I could provide. Also, having the chance to have women join us as freshmen and return as sophomores was a remarkable experience. However, I learned just as much from the people who participated. After each program, I felt more empowered as a student and a woman in the world. Nonetheless, I would say that the most gratifying part was witnessing the friendships among the attendees that grew beyond the program! 

What Cornell memory do you treasure the most?

In my senior year, I was honored to give the opening speech for Cornell’s 2024 Martin Luther King Jr. Commemorative Lecture, where I introduced Dr. Marla Love and esteemed Professor Kimberlé Crenshaw. Years prior, on November 13th, 1960, preaching from the hand-carved marble pulpit, with his silhouette contrasted by panels of stained glass and the decorative art of the altar, Martin Luther King Jr. stood at the helm of Cornell University’s Sage Chapel. Offering a sermon emphasizing the multidimensionality of God, he later abstracted this reasoning to racial equality, “urging those who would try to solve the problem not to forget any one of the dimensions.” More than 63 years later, at the 2024 commemorative lecture with Kimberlé Crenshaw, the same message of multidimensional equality reverberated through the chapel’s walls. To me and others who experienced the night in person, the lecture had a distinctly intergenerational and communal ambiance. I even had the privilege of sitting next to Dean Janice Turner, who, alongside Professor James Turner, founded Cornell's Africana Center and, like many others in the room, had experienced the teachings of MLK Jr. firsthand. In her closing remarks, Kimberlé Crenshaw shared an unforgettable and remarkably profound insight— that Martin Luther King Jr. had “every reason to give up," and yet he never did. It is this teaching, among many other positive memories that night, such as having the privilege of meeting and sharing the stage with Kimberlé Crenshaw, that will forever stay with me.

What have you accomplished as a Cornell student that you are most proud of?

I am most proud of my honors thesis work, which explores Black maternal health and well-being in Upstate New York. In the honors program, I discovered a niche within the existing literature to contribute to. Amidst the overwhelming statistics on racial disparities in maternal health, a distinct trend emerged: much of this literature and statistics operate and situate themselves in an assumption of ‘brokenness’ and ‘hopelessness.’ This research, while crucial in acknowledging the pain and suffering experienced by Black mothers, does not offer a comprehensive solution. In collaboration with our community partner, I focused on a new perspective: what proactive measures are Black women taking in response to the maternal health crisis? This shift in focus led me to discover that community-based doula care can significantly improve maternal outcomes.  Adopting this research question came with a crucial consideration: “How can we engage in a responsible and ethical partnership with the people whose stories we seek to understand?” This question naturally led me to community-participatory research. I also integrated the Sista Circle Methodology, a focus-group type discussion among Black women that also functions as a support network and communal space. In addition, we partnered with a Black reproductive health and healing center in Central NY, and their invaluable input guided us through the stages of the research design process, from the structure and planning of the Sista Circle sessions, to participant recruitment, and the development of interview questions.  I am proud that this experience has challenged me to foster community partnerships—skills that are important and enduring, and I intend to further develop them in graduate school.

Who or what influenced your Cornell education the most?

Professor Inniss-Thompson, a Cornell graduate and a fellow Ronald E McNair Post-baccalaureate Achievement Scholar, has been instrumental in my academic journey. I started doing research in Dr. Inniss-Thompson's lab, the Black Girl Visions Collaborative, during my junior summer as part of the McNair program. That summer and beyond, she introduced me to new lines of research, methods of qualitative inquiry, and positionality theories, blending my passions for psychology, social justice, and community-engaged work. In the past year, Dr. Inniss-Thompson helped me grow my budding ideas into a developed thesis project. At the same time, she has made an effort to connect me with other scholars in the field and helped me realize that I, too, can become a scholar in my own right.

If you were to offer advice to an incoming first year student, what would you say?

There are a great many resources on campus, and even in my senior year, I am still discovering new programs and opportunities. For example, I discovered the Office of Academic Diversity Initiatives (OADI) in my junior year, and they've played a pivotal role in my graduate school aspirations. My advice? Don't wait–reach out to as many people as possible and get involved early. Establishing relationships with your professors and attending office hours can truly transform your college experience. Professors are often eager to involve students in research early on and are receptive to fostering their interests. If research interests you, consider exploring programs like the Nexus Scholars (A&S), the Humanities Scholars Program, or the Rawlings Presidential Research Scholarship. Additionally, OADI offers programs such as the Ronald E. McNair Scholars and Pre-Professional Programs (P3). Lastly, don't forget to attend Club Fest and join a recreational club that aligns with your passions—it's one of the best ways to build a community with like-minded people and can really enhance your Cornell experience!

Every year, our faculty nominate graduating Arts & Sciences students to be featured as part of our Extraordinary Journeys series.  Read more about the Class of 202 4.

'It was rewarding to build something that people from the community enjoyed and learned from'

'I dream of investigating virtual reality and making an impact on the world'

'I'm a researcher in Cornell's Play and Learning Lab'

'My research made me realize how fascinating psychology is'

by Michael Friedrich

As part of a new series profiling participants in SSRC’s Criminal Justice Innovation Fellowship program, Romaine Campbell talks about his research on police and prison policies. This is a cross-posting with  Arnold Ventures .

Recently, the Social Science Research Council (SSRC), with support from Arnold Ventures (AV), launched the Criminal Justice Innovation (CJI) Fellowship program , which supports early-career researchers who are exploring what works to make communities safer and the criminal justice system fairer and more effective. 

“These CJI fellows will spend the next three years investing in their own policy-relevant research, as well as conducting policy analyses for AV that will directly inform our work,” Jennifer Doleac , executive vice president of criminal justice at AV, says. “We are eager to know if particular policies and programs are working, and this group of researchers will figure that out. I’m thrilled to get to work with these brilliant, talented scholars.”

According to Anna Harvey , president of the SSRC, this new fellowship program will uniquely foster innovative and rigorous causal research on criminal justice policies. “By supporting ‘people, not projects,’ the CJI fellowships will give these exceptional young researchers the time and freedom to pursue novel and creative approaches to evaluating criminal justice policies and practices. We can’t wait to see what they produce,” she says. 

In part one of a new series profiling the CJI fellows, AV spoke with Romaine Campbell, a Ph.D candidate in economics at Harvard University whose work addresses racial disparities in the criminal justice system.

Romaine Campbell: Police Behavior and Community Safety

A labor economist by training, Campbell will produce research as a fellow through the CJI fellowship program over the next two years before joining the faculty at Cornell University’s Brooks School of Public Policy. His research will focus on how federal scrutiny impacts police behavior and community safety, as well as the effects of higher education in prison on the outcomes of people who are incarcerated, among other topics. 

Campbell, who is originally from the Caribbean, says that he has seen how rigorous empirical research can help to explain the things that are important for his community. “A lot of my work looks at how we can improve law enforcement in the United States,” he says. “Policing serves an important role in ensuring the public safety of communities, but increasingly we’re aware of the social costs that can sometimes come with policing. My work examines policies that can help balance the important work that officers do with trying to mitigate the harms that come out of the excesses of policing.”

In 2023, Campbell published a working paper on the results of federal oversight of policing in Seattle. Using administrative data from the Seattle Police Department, the paper found that federal oversight resulted in a 26% reduction in police stops in the city — mostly by reducing stop-and-frisk style stops. Importantly, that reduction had no impact on the rates of serious crime or other community safety measures. 

As part of the new fellowship, Campbell expects to expand his work on the impacts of police oversight. By working with other police departments across the country, he will explore how officers respond to federal investigations, how it affects their behavior, and what types of policing are actually effective for crime reduction. Some policymakers, Campbell notes, have expressed concerns that adding oversight to police departments causes them to pull back from policing, which can damage community safety. As such, policies are needed that reduce the harms of policing while also allowing officers to address serious crime and build trust with the communities they serve. “As our society considers the best ways to improve policing,” he says, “it’s going to be important to document the types of policies that can achieve this without having deleterious effects for communities.” 

Additionally, working in partnership with the Philadelphia District Attorney’s Office, Campbell and colleagues intend to explore the impact of Brady Lists — public-facing records of information about police misconduct, decertification, use-of-force reports, and other metrics — to understand how prosecutors use such information in charging decisions in their cases. 

Separately, Campbell and colleagues plan to launch a project to understand how the provision of higher education in prison affects short- and long-term outcomes of people who are incarcerated, especially their social and economic mobility. He will focus on Iowa, where agreements with the state’s department of corrections, department of education, and workforce development agency will provide him with the necessary data. 

Campbell says that rigorous research is important for decision-making about public policy in the criminal justice system. “When you operate in public policy spaces, you really want to build out evidence-based policy,” he explains. “We can all have our feelings and intuitions about what will happen when a policy goes into effect, but the gold standard should be to implement policies that are supported by data.”

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Influence of environmental filtering and spatial processes on macroinvertebrate community in urban lakes in the Taihu Lake Basin, China

• Research Article
• Published: 17 May 2024

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• Wenze Lu 1 , 2 ,
• Xuwei Deng 1 , 2 ,
• Zixin Zhao 3 ,
• Ren Ren 1 , 2 ,
• Xiao Rao 1 , 2 ,
• Ping Xie 1 , 2 , 4 &
• Jun Chen 1 , 2  

Studies identifying the relative importance of multiple ecological processes in macroinvertebrate communities in urban lakes at a basin scale are rare. In this study, 14 urban lakes in the Taihu Lake Basin were selected to explore the relative importance of environmental filtering and spatial processes in the assembly of macroinvertebrate communities. Our findings revealed significant spatiotemporal variations in macroinvertebrate communities, both between lakes and across seasons. We found that environmental filtering exerted a greater influence on taxonomic total beta diversity and its individual components (species turnover and nestedness) compared to spatial processes. Key environmental variables such as water depth, water temperature, total dissolved solids, chlorophyll a , and lake surface area were found to be crucial in shaping macroinvertebrate communities within these urban lakes. The observed high spatial heterogeneity in environmental conditions, along with intermediate basin areas, good connectivity and short distances between lakes, and the high dispersal ability of dominant taxa, likely contributed to the dominance of environmental filtering in macroinvertebrate community assembly. Our study contributes to a better understanding of the underlying mechanisms governing macroinvertebrate community assembly in urban lakes, thereby providing valuable insights for studies on community ecology and water environmental protection in urban lakes.

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This study was supported by the National Key Research and Development Program of China (2022YFC3204103) and the National Natural Science Foundation of China (92251304).

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Wenze Lu, Xuwei Deng, Ren Ren, Xiao Rao, Ping Xie & Jun Chen

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Wenze Lu: conceptualization, data curation, formal analysis, investigation, methodology, visualization, writing—original draft. Xuwei Deng, Ping Xie, and Jun Chen: project administration, supervision, writing—review and editing. Zixin Zhao: formal analysis. Ren Ren and Xiao Rao: data curation, investigation.

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Lu, W., Deng, X., Zhao, Z. et al. Influence of environmental filtering and spatial processes on macroinvertebrate community in urban lakes in the Taihu Lake Basin, China. Environ Sci Pollut Res (2024). https://doi.org/10.1007/s11356-024-33694-z

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• Americans’ Changing Relationship With Local News

As news consumption habits become more digital, U.S. adults continue to see value in local outlets

Table of contents.

• 1. Attention to local news
• 2. Local news topics
• Americans’ changing local news providers
• How people feel about their local news media’s performance
• Most Americans think local journalists are in touch with their communities
• Interactions with local journalists
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• Acknowledgments
• The American Trends Panel survey methodology

The Pew-Knight Initiative supports new research on how Americans absorb civic information, form beliefs and identities, and engage in their communities.

Pew Research Center is a nonpartisan fact tank that informs the public about the issues, attitudes and trends shaping the world. Knight Foundation is a social investor committed to supporting informed and engaged communities. Learn more >

Pew Research Center conducted this study to better understand the local news habits and attitudes of U.S. adults. It is a follow-up to a similar study conducted in 2018 .

The survey of 5,146 U.S. adults was conducted from Jan. 22 to 28, 2024. Everyone who completed the survey is a member of the Center’s American Trends Panel (ATP), an online survey panel that is recruited through national, random sampling of residential addresses. This way nearly all U.S. adults have a chance of selection. The survey is weighted to be representative of the U.S. adult population by gender, race, ethnicity, partisan affiliation, education and other categories.  Read more about the ATP’s methodology .

Refer to the topline for the questions used for this survey , along with responses, and to the methodology for more details.

This is a Pew Research Center report from the Pew-Knight Initiative, a research program funded jointly by The Pew Charitable Trusts and the John S. and James L. Knight Foundation. Find related reports online at https://www.pewresearch.org/pew-knight/ .

The local news landscape in America is going through profound changes as both news consumers and producers continue to adapt to a more digital news environment. We recently asked U.S. adults about the ways they access local news, as well as their attitudes toward local journalism, finding that:

• A growing share of Americans prefer to get local news online, while fewer are getting news on TV or in print. And newspapers are no longer primarily consumed as a print product – the majority of readers of local daily newspapers now access them digitally.
• The share of U.S. adults who say they are paying close attention to local news has dropped since our last major survey of attitudes toward local news in 2018, mirroring declining attention to national news.
• Americans still see value in local news and local journalists. A large majority say local news outlets are at least somewhat important to the well-being of their local community. Most people also say local journalists are in touch with their communities and that their local news media perform well at several aspects of their jobs, such as reporting the news accurately.
• At the same time, a relatively small share of Americans (15%) say they have paid for local news in the last year. And many seem unaware of the major financial challenges facing local news: A 63% majority (albeit a smaller majority than in 2018) say they think their local news outlets are doing very or somewhat well financially.
• Majorities of both major parties say local media in their area are doing their jobs well. While Republicans and GOP-leaning independents are slightly less positive than Democrats and Democratic leaners in their opinions of local media, views of local news don’t have the same stark political divides that exist within Americans’ opinions about national media .
• Most Americans say local journalists should remain neutral on issues in their community, but a substantial minority say local journalists should take a more active role. About three-in-ten say local journalists should advocate for change in their communities, a view that’s especially common among Democrats and younger adults.

These are some of the key findings from a new Pew Research Center survey of about 5,000 U.S. adults conducted in January 2024. This is the first in a series of Pew Research Center reports on local news from the Pew-Knight Initiative, a research program funded jointly by The Pew Charitable Trusts and the John S. and James L. Knight Foundation.

Americans largely hold positive views of local news organizations

At a time when many local news outlets are struggling and Americans’ trust in the news media has waned, the vast majority of U.S. adults (85%) say local news outlets are at least somewhat important to the well-being of their local community. This includes 44% who say local journalism is extremely or very important to their community

About seven-in-ten U.S. adults (69%) say that local journalists in their area are mostly in touch with their community, up from 63% who said this in 2018. And most Americans also say their local news organizations are doing well at four key roles:

• Reporting news accurately (71%)
• Covering the most important stories (68%)
• Being transparent (63%)
• Keeping an eye on local political leaders (61%).

These are relatively positive views compared with how Americans see news organizations more broadly. For instance, a 2022 Pew Research Center survey found that fewer than half of U.S. adults say that news organizations in general do a very or somewhat good job of covering the most important stories, reporting the news accurately and serving as a watchdog over elected leaders.

What’s more, views toward local news are not as politically polarized as Americans’ opinions about the news media overall. While Republicans and GOP-leaning independents are not quite as positive as Democrats and Democratic leaners in some of their assessments of local journalists, most Republicans still say the local media in their area are doing their jobs well.

For example, roughly three-quarters of Democrats (78%) say their local media do well at reporting news accurately, compared with about two-thirds of Republicans (66%).

By comparison, the 2022 survey found that 51% of Democrats and just 17% of Republicans say that news organizations in general do a very or somewhat good job of reporting the news accurately.

Jump to more information on views toward local news organizations.

Fewer Americans are closely following local news – and other types of news

Despite these positive views toward local news organizations, there are signs that Americans are engaging less with local journalism than they used to.

The share of Americans who say they follow local news very closely has fallen by 15 percentage points since 2016 (from 37% to 22%). Most U.S. adults still say they follow local news at least somewhat closely (66%), but this figure also has dropped in recent years.

This trend is not unique to local news – Americans’ attention to national and international news also has declined.

The local news landscape is becoming more digital

The ways in which Americans access local news are changing, reflecting an increasingly digital landscape – and matching patterns in overall news consumption habits .

Preferred pathways to local news

• Fewer people now say they prefer to get local news through a television set (32%, down from 41% who said the same in 2018).
• Americans are now more likely to say they prefer to get local news online, either through news websites (26%) or social media (23%). Both of these numbers have increased in recent years.
• Smaller shares prefer getting their local news from a print newspaper or on the radio (9% each).

Specific sources for local news

The types of sources (e.g., outlets or organizations) Americans are turning to are changing as well:

• While local television stations are still the most common source of local news beyond friends, family and neighbors, the share who often or sometimes get news there has declined from 70% to 64% in recent years.
• Online forums, such as Facebook groups or the Nextdoor app, have become a more common destination for local news: 52% of U.S. adults say they at least sometimes get local news from these types of forums, up 14 percentage points from 2018. This is on par with the percentage who get local news at least sometimes from local radio stations.
• Meanwhile, a third of Americans say they at least sometimes get local news from a daily newspaper, regardless of whether it is accessed via print, online or through a social media website – down 10 points from 2018. The share of Americans who get local news from newspapers is now roughly on par with the share who get local news from local government agencies (35%) or local newsletters or Listservs (31%).

Not only are fewer Americans getting local news from newspapers, but local daily newspapers are now more likely to be accessed online than in print.

• 31% of those who get news from daily newspapers do so via print, while far more (66%) do so digitally, whether through websites, apps, emails or social media posts that include content from the paper.
• In 2018, just over half of those who got news from local daily newspapers (54%) did so from print, and 43% did so via a website, app, email or social media site.

There is a similar move toward digital access for local TV stations, though local TV news is still mostly consumed through a TV set.

• In 2024, 62% of those getting news from local TV stations do so through a television, compared with 37% who do so through one of the digital pathways.
• An even bigger majority of local TV news consumers (76%) got that news through a TV set in 2018.

Jump to more information on how people access local news.

The financial state of local news

The turmoil for the local news industry in recent years has come with major financial challenges. Circulation and advertising revenue for newspapers have seen sharp declines in the last decade, according to our analysis of industry data , and other researchers have documented that thousands of newspapers have stopped publishing in the last two decades. There also is evidence of audience decline for local TV news stations, although advertising revenue on local TV has been more stable.

When asked about the financial state of the news outlets in their community, a majority of Americans (63%) say they think their local news outlets are doing very or somewhat well, with a third saying that they’re not doing too well or not doing well at all. This is a slightly more pessimistic view than in 2018, when 71% said their local outlets were doing well, though it is still a relatively positive assessment of the financial state of the industry.

Just 15% of Americans say they have paid or given money to any local news source in the past year – a number that has not changed much since 2018. The survey also asked Americans who did not pay for news in the past year the main reason why not. The most common explanation is that people don’t pay because they can find plenty of free local news, although young adults are more inclined to say they just aren’t interested enough in local news to pay for it.

Jump to more information on how people view the financial state of local news.

Other key findings in this report

Americans get local news about a wide variety of topics. Two-thirds or more of U.S. adults at least sometimes get news about local weather, crime, government and politics, and traffic and transportation, while smaller shares (but still at least half) say they get local news about arts and culture, the economy, schools, and sports.

Relatively few Americans are highly satisfied with the coverage they see of many topics. The survey also asked respondents who at least sometimes get each type of local news how satisfied they are with the news they get. With the exception of weather, fewer than half say they are extremely or very satisfied with the quality of the news they get about each topic. For example, about a quarter of those who consume news about their local economy (26%) say they are extremely or very satisfied with this news. Read more about different local news topics in Chapter 2.

When asked whether local journalists should remain neutral on community issues or advocate for change in the community, a majority of Americans (69%) say journalists should remain neutral, reflecting more traditional journalistic norms. However, 29% say that local journalists should be advocating for change in their communities. Younger adults are the most likely to favor advocacy by journalists: 39% of those ages 18 to 29 say that local journalists should push for change, as do 34% of those 30 to 49. Read more about Americans’ views of the role of local journalists in Chapter 4.

Americans who feel a strong sense of connection to their community are more likely to engage with local news, say that local news outlets are important to the community, and rate local media more highly overall. For example, 66% of those who say they are very attached to their community say local news outlets are extremely or very important to the well-being of their local community, compared with 46% of those who are somewhat attached and 31% of those who are not very or not at all attached to their community.

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• v.110(3); 2019 Jun

Language: English | French

Why public health matters today and tomorrow: the role of applied public health research

Lindsay mclaren.

1 University of Calgary, Calgary, Canada

Paula Braitstein

2 University of Toronto, Toronto, Canada

David Buckeridge

3 McGill University, Montreal, Canada

Damien Contandriopoulos

4 University of Victoria, Victoria, Canada

Maria I. Creatore

5 CIHR Institute of Population & Public Health and University of Toronto, Toronto, Canada

Guy Faulkner

6 University of British Columbia, Vancouver, Canada

David Hammond

7 University of Waterloo, Waterloo, Canada

Steven J. Hoffman

8 CIHR Institute of Population & Public Health and York University, Toronto, Canada

Yan Kestens

9 Université de Montréal, Montreal, Canada

Scott Leatherdale

Jonathan mcgavock.

10 University of Manitoba and the Children’s Hospital Research Institute of Manitoba, Winnipeg, Canada

Wendy V. Norman

11 University of British Columbia, Vancouver, Canada

Candace Nykiforuk

12 University of Alberta, Edmonton, Canada

Valéry Ridde

13 IRD (French Institute For Research on Sustainable Development), CEPED (IRD-Université Paris Descartes), ERL INSERM SAGESUD, Université Paris Sorbonne Cités, Paris, France

14 University of Montreal Public Health Research Institute (IRSPUM), Montreal, Canada

Janet Smylie

Public health is critical to a healthy, fair, and sustainable society. Realizing this vision requires imagining a public health community that can maintain its foundational core while adapting and responding to contemporary imperatives such as entrenched inequities and ecological degradation. In this commentary, we reflect on what tomorrow’s public health might look like, from the point of view of our collective experiences as researchers in Canada who are part of an Applied Public Health Chairs program designed to support “innovative population health research that improves health equity for citizens in Canada and around the world.” We view applied public health research as sitting at the intersection of core principles for population and public health: namely sustainability, equity, and effectiveness. We further identify three attributes of a robust applied public health research community that we argue are necessary to permit contribution to those principles: researcher autonomy, sustained intersectoral research capacity, and a critical perspective on the research-practice-policy interface. Our intention is to catalyze further discussion and debate about why and how public health matters today and tomorrow, and the role of applied public health research therein.

Résumé

La santé publique est essentielle à une société saine, juste et durable. Pour donner forme à cette vision, il faut imaginer une communauté de la santé publique capable de préserver ses valeurs fondamentales tout en s’adaptant et en réagissant aux impératifs du moment, comme les inégalités persistantes et la dégradation de l’environnement. Dans notre commentaire, nous esquissons un portrait possible de la santé publique de demain en partant de notre expérience collective de chercheurs d’un programme canadien de chaires en santé publique appliquée qui visent à appuyer « la recherche innovatrice sur la santé de la population en vue d’améliorer l’équité en santé au Canada et ailleurs ». Nous considérons la recherche appliquée en santé publique comme se trouvant à la croisée des principes fondamentaux de la santé publique et des populations, à savoir : la durabilité, l’équité et l’efficacité. Nous définissons aussi les trois attributs d’une solide communauté de recherche appliquée en santé publique nécessaires selon nous au respect de ces principes : l’autonomie des chercheurs, une capacité de recherche intersectorielle soutenue et une perspective critique de l’interface entre la recherche, la pratique et les politiques. Nous voulons susciter des discussions et des débats approfondis sur l’importance de la santé publique pour aujourd’hui et pour demain et sur le rôle de la recherche appliquée en santé publique.

Introduction

Public health is critical to a healthy, fair, and sustainable society. Public health’s role in this vision stems from its foundational values of social justice and collectivity (Rutty and Sullivan 2010 ) and—we argue—from its position at the interface of research, practice, and policy.

Realizing this vision requires imagining a public health community that can maintain that foundational core, embrace opportunities of our changing world, and predict and adapt to emerging challenges in a timely manner. Unprecedented ecosystem disruption creates far-reaching health implications for which the public health community is unprepared (CPHA 2015 ; Whitmee et al. 2015 ). Human displacement is at its highest levels on record; those forced from home include “stateless people,” who are denied access to basic rights such as education, health care, employment, and freedom of movement ( http://www.unhcr.org/figures-at-a-glance.html ). Significant growth in urban populations creates an urgent need to improve urban environments, including policies to reduce air pollution and prevent sprawl (CPHA 2015 ; Frumkin et al. 2004 ), to reduce the substantial burden of morbidity and mortality attributable to behaviours such as physical inactivity, which negatively impact quality and quantity of life (Manuel et al. 2016 ). Significant and entrenched forms of economic, social, political, and historical marginalization and exclusion (TRC 2015 ), coupled with inequitable and unsustainable patterns of resource consumption and technological development (CPHA 2015 ; Whitmee et al. 2015 ), cause and perpetuate health inequities. These inequities underlie the now longstanding recognition that the unequal distributions of health-damaging experiences are the main determinants of health (CSDH 2008 ; Ridde 2004 ).

These imperatives demand a broadly characterized public health community. A now classic definition of public health is the science and art of preventing disease, prolonging life, and promoting health through the organized efforts of society (Last 2001 ). Public health, conceptualized in this manner, engages multiple sectors, embraces inclusion and empowerment (Ridde 2007 ), and demands navigating diverse political and economic agendas. Across Canada, a large and growing proportion of provincial spending is devoted to health care, while the proportion devoted to social spending (i.e., the social determinants of health) is small, flat-lining, and in some places declining (Dutton et al. 2018 ). Recent discourse has highlighted a weakening of formal public health infrastructure (Guyon et al. 2017 ) and points of fracture within the field (Lucyk and McLaren 2017 ). Efforts to strengthen public health, in its broadest sense, and to work towards unity of purpose (Talbot 2018 ) are needed now more than ever. What might such efforts look like?

We reflect on this question from our perspectives as researchers who are part of an Applied Public Health Chairs (APHC) program designed to support “innovative population health research that improves health equity for citizens in Canada and around the world.” 1 The applied dimension 2 is facilitated through the program’s focus on “interdisciplinary collaborations and mentorship of researchers and decision makers in health and other sectors” ( http://www.cihr-irsc.gc.ca/e/48898.html ). The APHC program (Box 1) is part of a broader set of efforts to address gaps in public health capacity, including research. Cross-cutting themes for the 2014 cohort (Box 2) include the following: healthy public policy, supportive environments (e.g., cities), diverse methodological approaches, global health, and health equity; many of which 3 align with a Public Health Services and Systems Research perspective in that they “identif[y] the implementation strategies that work, building evidence to support decision-making across the public health sphere” ( http://www.publichealthsystems.org/ ). Applied public health research is broad and could span CIHR Pillars 4 (social, cultural, environmental, and population health research) and 3 (health services research); the 2014 APHC cohort is predominantly aligned with Pillar 4.

The APHC program represents a significant Canadian investment in public health, and thus provides an important vantage point from which to reflect on why public health matters today, and tomorrow.

Box 1 The Applied Public Health Chairs program

Box 2 2014 cohort of Applied Public Health Chairs

More details available at: http://www.cihr-irsc.gc.ca/e/48898.html

Our proposal

We propose that applied public health research is a critical component of a robust population and public health community. As illustrated in Fig.  1 , we view applied public health research as sitting at the nexus of three core principles: (1) sustainability, (2) equity, and (3) effectiveness, which align with a vision of public health as critical to a healthy, fair, and sustainable society. By sustainability , we mean an approach or way of thinking, about public health in particular (e.g., Schell et al. 2013 ) and population well-being more broadly ( https://sustainabledevelopment.un.org/sdgs ) that emphasizes “meet[ing] the needs of the present generation without compromising the ability of future generations to meet their own needs” (Brundtland et al. 1987 ). Sustainability has social, economic, environmental, and political dimensions. We define equity as a worldview concerned with the embedded or systemic—and often invisible—drivers of unfair distributions of health-damaging experiences. In Canada and elsewhere, inequity is entrenched in legacies of colonial, structural racism designed to sustain inequitable patterns of power and wealth. Equity transcends diverse axes and perspectives, and an equity lens is action-oriented (Ridde 2007 ). Finally, effectiveness refers to impact or benefits for population well-being, as demonstrated by rigorous research. Explicit core values (e.g., equity), while important, are insufficient without translation to demonstrable outcomes (Potvin and Jones 2011 ). These core principles—sustainability, equity, and effectiveness—overlap and are mutually reinforcing; for example, the inequitable concentration of power, wealth, and exploitation of resources precludes sustainability.

Visual depiction of the role and attributes of applied public health research, vis-à-vis core population and public health principles of equity, sustainability, and effectiveness

Although these principles are applicable to the public health community broadly (i.e., including but not limited to researchers), applied public health researchers are uniquely situated to embrace sustainability, equity, and effectiveness when asking questions and generating policy- and practice-relevant knowledge, as illustrated below. Drawing on our collective experiences, we describe three necessary attributes of applied public health research that support our model in Fig.  1 : researcher autonomy, sustained intersectoral research capacity; and a critical perspective on the research-practice-policy interface. We assert that applied public health research is best positioned to contribute meaningfully to the principles of sustainability, effectiveness, and equity if the attributes described below are in place.

Researcher autonomy

Researcher autonomy is a precondition for innovation and independent thinking, and for building and sustaining the conditions for collective efforts. Our working definition of researcher autonomy is the capacity to devote time and energy to activities that, at the researcher’s discretion, facilitate research that embraces principles of sustainability, effectiveness, and equity. Autonomy, beyond the scope of general academic independence, provides the freedom to build and nurture partnerships, and to navigate among universities, health care systems, governments, communities, and across sectors. Effective and respectful partnerships are critical to rigorous intersectoral work and can provide an important platform to discuss systemic forms of inequity (e.g., Olivier et al. 2016 ; Morton Ninomiya et al. 2017 ). Recognizing a potential tension around the role of the researcher in an applied public health context, we deliberately selected the word “autonomy,” which we view as conducive to meaningful collaboration (although that may be experienced differently by different researchers), rather than “independence” which can be seen as contrary to such collaboration. Yet despite their importance, the time and resources to form and sustain those relationships are often not accommodated within funding and academic structures.

Autonomy, when coupled with resources and recognition, permits applied public health researchers to balance foundations of public health with current policy relevance. Although many of us have research programs with particular thematic foci (e.g., physical activity, dental health, HIV), autonomy provides space and credibility to connect those focal issues to enduring and evolving problems in public health (e.g., determinants of population well-being and equity), and to inform the contemporary policy context. Examples include research on health implications of neighbourhood gentrification in urban settings (Steinmetz-Wood et al. 2017 ); using community water fluoridation as a window into public and political understanding and acceptance of public health interventions that are universal in nature (McLaren and Petit 2018 ); and using innovative sampling methods to identify how census methods can perpetuate exclusion (Rotondi et al. 2017 ). That latter work, which estimated that the national census undercounts urban Indigenous populations in Toronto by a factor of approximately 2–4, provides impetus to work towards an inclusive system that respects individual and collective data sovereignty, and that is accountable to the communities from whom data are collected.

These implications of autonomy are consistent with calls for greater reflexivity in public health research (Tremblay and Parent 2014 ).

Insight : To strengthen applied public health research in Canada, researcher autonomy – whereby researchers have the credibility and protected time to set their own agendas in partnerships with the communities they serve – must be privileged.

Sustained intersectoral research capacity

Applied public health research requires funding for resources and infrastructure that are essential to sustain an intersectoral research program, but for which operating funds are otherwise not readily available. Examples include ongoing cohort studies (e.g., Leatherdale et al. 2014 ), research software platforms (e.g., Shaban-Nejad et al. 2017 ), meaningful public sector engagement in developing public health priorities, and knowledge translation activities.

Partnerships, also considered under researcher autonomy above, are one form of intersectoral research capacity. In applied public health research, having strong partnerships in place permits timely response to research opportunities that arise quickly in real-world settings. Examples in our cohort include instances where researchers were able to mobilize for rapid response funding competitions in areas of environment and health, communicable disease in the global South, and Indigenous training networks, because collaborative teams and potential for knowledge co-creation and transfer were already in place.

Insight : A robust applied public health research community requires sustained funding to support foundations of a credible and internationally-competitive research program (e.g., cohort studies, research software platforms, meaningful public sector engagement) that are difficult to resource via usual operating grant channels.

A critical perspective on the research-practice-policy interface

One barrier to evidence-based policy in applied public health is an assumption that evidence is the most important factor in making policy decisions, versus a more holistic view of the policymaking process where evidence is one of many factors, as discussed in recent work (Fafard and Hoffman 2018 ; O’Neill et al. 2019 ; Ridde and Yaméogo 2018 ).

Applied public health research is ideally positioned to embrace a critical perspective on the research-practice-policy interface. Several recent trends are promising in that regard. These include the following: substantive efforts to bridge public health and social science scholarship ( http://www.cihr-irsc.gc.ca/e/50604.html ), growing success by Pillar 4 researchers (including applied public health) in CIHR’s open funding competitions ( http://www.cihr-irsc.gc.ca/e/50488.html ), and the CIHR Health System Impact Fellowship initiative ( http://www.cihr-irsc.gc.ca/e/50612.html ), which could facilitate the placement of doctoral and post-doctoral academic researchers within the public health system and related (e.g., public, NGO) organizations.

Insight : Applied public health researchers are ideally positioned to embrace and model a sophisticated and interdisciplinary perspective on the research-practice-policy interface. To do so, opportunities for researchers (including trainees) to gain skills and experience to navigate the policy context are needed.

Against the backdrop of discourse about a weakening of public health infrastructure and fracture within the field (Guyon et al. 2017 ; Lucyk and McLaren 2017 ), we believe that there is value in working towards a unity of purpose (Talbot 2018 ). This commentary was prompted by a shared belief that through our experience with the Applied Public Health Chair Program, we have seen a glimpse of what is needed to achieve a population and public health community that is positioned to tackle societal imperatives, which includes an important role for applied public health research, spanning CIHR Pillars 3 and 4. Anchored in principles of sustainability, equity, and effectiveness, we assert a strong need for applied research infrastructure that privileges and supports: researcher autonomy, sustained funding to support foundations of a credible and internationally competitive research program, and opportunities for researchers (including trainees) to gain skills and experience to navigate the policy context. We welcome and invite further discussion and debate.

1 Under CIHR-IPPH’s mandate, population health research refers to “research into the complex biological, social, cultural, and environmental interactions that determine the health of individuals, communities, and global populations.”

2 Applied may be defined as follows: “put to practical use,” as opposed to being theoretical ( https://www.merriam-webster.com/dictionary/applied ).

3 For example: https://uwaterloo.ca/compass-system/ (Leatherdale); http://cart-grac.ubc.ca/ (Norman); http://www.healthsystemsglobal.org/ (Ridde).

The original version of this article was revised due to a retrospective Open Access order.

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Change history

The article ���Why public health matters today and tomorrow: the role of applied public health research,��� written by Lindsay McLaren et al., was originally published Online First without Open Access.

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Cultural Relativity and Acceptance of Embryonic Stem Cell Research

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There is a debate about the ethical implications of using human embryos in stem cell research, which can be influenced by cultural, moral, and social values. This paper argues for an adaptable framework to accommodate diverse cultural and religious perspectives. By using an adaptive ethics model, research protections can reflect various populations and foster growth in stem cell research possibilities.

INTRODUCTION

Stem cell research combines biology, medicine, and technology, promising to alter health care and the understanding of human development. Yet, ethical contention exists because of individuals’ perceptions of using human embryos based on their various cultural, moral, and social values. While these disagreements concerning policy, use, and general acceptance have prompted the development of an international ethics policy, such a uniform approach can overlook the nuanced ethical landscapes between cultures. With diverse viewpoints in public health, a single global policy, especially one reflecting Western ethics or the ethics prevalent in high-income countries, is impractical. This paper argues for a culturally sensitive, adaptable framework for the use of embryonic stem cells. Stem cell policy should accommodate varying ethical viewpoints and promote an effective global dialogue. With an extension of an ethics model that can adapt to various cultures, we recommend localized guidelines that reflect the moral views of the people those guidelines serve.

Stem cells, characterized by their unique ability to differentiate into various cell types, enable the repair or replacement of damaged tissues. Two primary types of stem cells are somatic stem cells (adult stem cells) and embryonic stem cells. Adult stem cells exist in developed tissues and maintain the body’s repair processes. [1] Embryonic stem cells (ESC) are remarkably pluripotent or versatile, making them valuable in research. [2] However, the use of ESCs has sparked ethics debates. Considering the potential of embryonic stem cells, research guidelines are essential. The International Society for Stem Cell Research (ISSCR) provides international stem cell research guidelines. They call for “public conversations touching on the scientific significance as well as the societal and ethical issues raised by ESC research.” [3] The ISSCR also publishes updates about culturing human embryos 14 days post fertilization, suggesting local policies and regulations should continue to evolve as ESC research develops. [4]  Like the ISSCR, which calls for local law and policy to adapt to developing stem cell research given cultural acceptance, this paper highlights the importance of local social factors such as religion and culture.

I.     Global Cultural Perspective of Embryonic Stem Cells

Views on ESCs vary throughout the world. Some countries readily embrace stem cell research and therapies, while others have stricter regulations due to ethical concerns surrounding embryonic stem cells and when an embryo becomes entitled to moral consideration. The philosophical issue of when the “someone” begins to be a human after fertilization, in the morally relevant sense, [5] impacts when an embryo becomes not just worthy of protection but morally entitled to it. The process of creating embryonic stem cell lines involves the destruction of the embryos for research. [6] Consequently, global engagement in ESC research depends on social-cultural acceptability.

a.     US and Rights-Based Cultures

In the United States, attitudes toward stem cell therapies are diverse. The ethics and social approaches, which value individualism, [7] trigger debates regarding the destruction of human embryos, creating a complex regulatory environment. For example, the 1996 Dickey-Wicker Amendment prohibited federal funding for the creation of embryos for research and the destruction of embryos for “more than allowed for research on fetuses in utero.” [8] Following suit, in 2001, the Bush Administration heavily restricted stem cell lines for research. However, the Stem Cell Research Enhancement Act of 2005 was proposed to help develop ESC research but was ultimately vetoed. [9] Under the Obama administration, in 2009, an executive order lifted restrictions allowing for more development in this field. [10] The flux of research capacity and funding parallels the different cultural perceptions of human dignity of the embryo and how it is socially presented within the country’s research culture. [11]

b.     Ubuntu and Collective Cultures

African bioethics differs from Western individualism because of the different traditions and values. African traditions, as described by individuals from South Africa and supported by some studies in other African countries, including Ghana and Kenya, follow the African moral philosophies of Ubuntu or Botho and Ukama , which “advocates for a form of wholeness that comes through one’s relationship and connectedness with other people in the society,” [12] making autonomy a socially collective concept. In this context, for the community to act autonomously, individuals would come together to decide what is best for the collective. Thus, stem cell research would require examining the value of the research to society as a whole and the use of the embryos as a collective societal resource. If society views the source as part of the collective whole, and opposes using stem cells, compromising the cultural values to pursue research may cause social detachment and stunt research growth. [13] Based on local culture and moral philosophy, the permissibility of stem cell research depends on how embryo, stem cell, and cell line therapies relate to the community as a whole. Ubuntu is the expression of humanness, with the person’s identity drawn from the “’I am because we are’” value. [14] The decision in a collectivistic culture becomes one born of cultural context, and individual decisions give deference to others in the society.

Consent differs in cultures where thought and moral philosophy are based on a collective paradigm. So, applying Western bioethical concepts is unrealistic. For one, Africa is a diverse continent with many countries with different belief systems, access to health care, and reliance on traditional or Western medicines. Where traditional medicine is the primary treatment, the “’restrictive focus on biomedically-related bioethics’” [is] problematic in African contexts because it neglects bioethical issues raised by traditional systems.” [15] No single approach applies in all areas or contexts. Rather than evaluating the permissibility of ESC research according to Western concepts such as the four principles approach, different ethics approaches should prevail.

Another consideration is the socio-economic standing of countries. In parts of South Africa, researchers have not focused heavily on contributing to the stem cell discourse, either because it is not considered health care or a health science priority or because resources are unavailable. [16] Each country’s priorities differ given different social, political, and economic factors. In South Africa, for instance, areas such as maternal mortality, non-communicable diseases, telemedicine, and the strength of health systems need improvement and require more focus. [17] Stem cell research could benefit the population, but it also could divert resources from basic medical care. Researchers in South Africa adhere to the National Health Act and Medicines Control Act in South Africa and international guidelines; however, the Act is not strictly enforced, and there is no clear legislation for research conduct or ethical guidelines. [18]

Some parts of Africa condemn stem cell research. For example, 98.2 percent of the Tunisian population is Muslim. [19] Tunisia does not permit stem cell research because of moral conflict with a Fatwa. Religion heavily saturates the regulation and direction of research. [20] Stem cell use became permissible for reproductive purposes only recently, with tight restrictions preventing cells from being used in any research other than procedures concerning ART/IVF.  Their use is conditioned on consent, and available only to married couples. [21] The community's receptiveness to stem cell research depends on including communitarian African ethics.

c.     Asia

Some Asian countries also have a collective model of ethics and decision making. [22] In China, the ethics model promotes a sincere respect for life or human dignity, [23] based on protective medicine. This model, influenced by Traditional Chinese Medicine (TCM), [24] recognizes Qi as the vital energy delivered via the meridians of the body; it connects illness to body systems, the body’s entire constitution, and the universe for a holistic bond of nature, health, and quality of life. [25] Following a protective ethics model, and traditional customs of wholeness, investment in stem cell research is heavily desired for its applications in regenerative therapies, disease modeling, and protective medicines. In a survey of medical students and healthcare practitioners, 30.8 percent considered stem cell research morally unacceptable while 63.5 percent accepted medical research using human embryonic stem cells. Of these individuals, 89.9 percent supported increased funding for stem cell research. [26] The scientific community might not reflect the overall population. From 1997 to 2019, China spent a total of $576 million (USD) on stem cell research at 8,050 stem cell programs, increased published presence from 0.6 percent to 14.01 percent of total global stem cell publications as of 2014, and made significant strides in cell-based therapies for various medical conditions. [27] However, while China has made substantial investments in stem cell research and achieved notable progress in clinical applications, concerns linger regarding ethical oversight and transparency. [28] For example, the China Biosecurity Law, promoted by the National Health Commission and China Hospital Association, attempted to mitigate risks by introducing an institutional review board (IRB) in the regulatory bodies. 5800 IRBs registered with the Chinese Clinical Trial Registry since 2021. [29] However, issues still need to be addressed in implementing effective IRB review and approval procedures.

The substantial government funding and focus on scientific advancement have sometimes overshadowed considerations of regional cultures, ethnic minorities, and individual perspectives, particularly evident during the one-child policy era. As government policy adapts to promote public stability, such as the change from the one-child to the two-child policy, [30] research ethics should also adapt to ensure respect for the values of its represented peoples.

Japan is also relatively supportive of stem cell research and therapies. Japan has a more transparent regulatory framework, allowing for faster approval of regenerative medicine products, which has led to several advanced clinical trials and therapies. [31] South Korea is also actively engaged in stem cell research and has a history of breakthroughs in cloning and embryonic stem cells. [32] However, the field is controversial, and there are issues of scientific integrity. For example, the Korean FDA fast-tracked products for approval, [33] and in another instance, the oocyte source was unclear and possibly violated ethical standards. [34] Trust is important in research, as it builds collaborative foundations between colleagues, trial participant comfort, open-mindedness for complicated and sensitive discussions, and supports regulatory procedures for stakeholders. There is a need to respect the culture’s interest, engagement, and for research and clinical trials to be transparent and have ethical oversight to promote global research discourse and trust.

d.     Middle East

Countries in the Middle East have varying degrees of acceptance of or restrictions to policies related to using embryonic stem cells due to cultural and religious influences. Saudi Arabia has made significant contributions to stem cell research, and conducts research based on international guidelines for ethical conduct and under strict adherence to guidelines in accordance with Islamic principles. Specifically, the Saudi government and people require ESC research to adhere to Sharia law. In addition to umbilical and placental stem cells, [35] Saudi Arabia permits the use of embryonic stem cells as long as they come from miscarriages, therapeutic abortions permissible by Sharia law, or are left over from in vitro fertilization and donated to research. [36] Laws and ethical guidelines for stem cell research allow the development of research institutions such as the King Abdullah International Medical Research Center, which has a cord blood bank and a stem cell registry with nearly 10,000 donors. [37] Such volume and acceptance are due to the ethical ‘permissibility’ of the donor sources, which do not conflict with religious pillars. However, some researchers err on the side of caution, choosing not to use embryos or fetal tissue as they feel it is unethical to do so. [38]

Jordan has a positive research ethics culture. [39] However, there is a significant issue of lack of trust in researchers, with 45.23 percent (38.66 percent agreeing and 6.57 percent strongly agreeing) of Jordanians holding a low level of trust in researchers, compared to 81.34 percent of Jordanians agreeing that they feel safe to participate in a research trial. [40] Safety testifies to the feeling of confidence that adequate measures are in place to protect participants from harm, whereas trust in researchers could represent the confidence in researchers to act in the participants’ best interests, adhere to ethical guidelines, provide accurate information, and respect participants’ rights and dignity. One method to improve trust would be to address communication issues relevant to ESC. Legislation surrounding stem cell research has adopted specific language, especially concerning clarification “between ‘stem cells’ and ‘embryonic stem cells’” in translation. [41] Furthermore, legislation “mandates the creation of a national committee… laying out specific regulations for stem-cell banking in accordance with international standards.” [42] This broad regulation opens the door for future global engagement and maintains transparency. However, these regulations may also constrain the influence of research direction, pace, and accessibility of research outcomes.

e.     Europe

In the European Union (EU), ethics is also principle-based, but the principles of autonomy, dignity, integrity, and vulnerability are interconnected. [43] As such, the opportunity for cohesion and concessions between individuals’ thoughts and ideals allows for a more adaptable ethics model due to the flexible principles that relate to the human experience The EU has put forth a framework in its Convention for the Protection of Human Rights and Dignity of the Human Being allowing member states to take different approaches. Each European state applies these principles to its specific conventions, leading to or reflecting different acceptance levels of stem cell research. [44]

For example, in Germany, Lebenzusammenhang , or the coherence of life, references integrity in the unity of human culture. Namely, the personal sphere “should not be subject to external intervention.” [45]  Stem cell interventions could affect this concept of bodily completeness, leading to heavy restrictions. Under the Grundgesetz, human dignity and the right to life with physical integrity are paramount. [46] The Embryo Protection Act of 1991 made producing cell lines illegal. Cell lines can be imported if approved by the Central Ethics Commission for Stem Cell Research only if they were derived before May 2007. [47] Stem cell research respects the integrity of life for the embryo with heavy specifications and intense oversight. This is vastly different in Finland, where the regulatory bodies find research more permissible in IVF excess, but only up to 14 days after fertilization. [48] Spain’s approach differs still, with a comprehensive regulatory framework. [49] Thus, research regulation can be culture-specific due to variations in applied principles. Diverse cultures call for various approaches to ethical permissibility. [50] Only an adaptive-deliberative model can address the cultural constructions of self and achieve positive, culturally sensitive stem cell research practices. [51]

II.     Religious Perspectives on ESC

Embryonic stem cell sources are the main consideration within religious contexts. While individuals may not regard their own religious texts as authoritative or factual, religion can shape their foundations or perspectives.

The Qur'an states:

“And indeed We created man from a quintessence of clay. Then We placed within him a small quantity of nutfa (sperm to fertilize) in a safe place. Then We have fashioned the nutfa into an ‘alaqa (clinging clot or cell cluster), then We developed the ‘alaqa into mudgha (a lump of flesh), and We made mudgha into bones, and clothed the bones with flesh, then We brought it into being as a new creation. So Blessed is Allah, the Best of Creators.” [52]

Many scholars of Islam estimate the time of soul installment, marked by the angel breathing in the soul to bring the individual into creation, as 120 days from conception. [53] Personhood begins at this point, and the value of life would prohibit research or experimentation that could harm the individual. If the fetus is more than 120 days old, the time ensoulment is interpreted to occur according to Islamic law, abortion is no longer permissible. [54] There are a few opposing opinions about early embryos in Islamic traditions. According to some Islamic theologians, there is no ensoulment of the early embryo, which is the source of stem cells for ESC research. [55]

In Buddhism, the stance on stem cell research is not settled. The main tenets, the prohibition against harming or destroying others (ahimsa) and the pursuit of knowledge (prajña) and compassion (karuna), leave Buddhist scholars and communities divided. [56] Some scholars argue stem cell research is in accordance with the Buddhist tenet of seeking knowledge and ending human suffering. Others feel it violates the principle of not harming others. Finding the balance between these two points relies on the karmic burden of Buddhist morality. In trying to prevent ahimsa towards the embryo, Buddhist scholars suggest that to comply with Buddhist tenets, research cannot be done as the embryo has personhood at the moment of conception and would reincarnate immediately, harming the individual's ability to build their karmic burden. [57] On the other hand, the Bodhisattvas, those considered to be on the path to enlightenment or Nirvana, have given organs and flesh to others to help alleviate grieving and to benefit all. [58] Acceptance varies on applied beliefs and interpretations.

Catholicism does not support embryonic stem cell research, as it entails creation or destruction of human embryos. This destruction conflicts with the belief in the sanctity of life. For example, in the Old Testament, Genesis describes humanity as being created in God’s image and multiplying on the Earth, referencing the sacred rights to human conception and the purpose of development and life. In the Ten Commandments, the tenet that one should not kill has numerous interpretations where killing could mean murder or shedding of the sanctity of life, demonstrating the high value of human personhood. In other books, the theological conception of when life begins is interpreted as in utero, [59] highlighting the inviolability of life and its formation in vivo to make a religious point for accepting such research as relatively limited, if at all. [60] The Vatican has released ethical directives to help apply a theological basis to modern-day conflicts. The Magisterium of the Church states that “unless there is a moral certainty of not causing harm,” experimentation on fetuses, fertilized cells, stem cells, or embryos constitutes a crime. [61] Such procedures would not respect the human person who exists at these stages, according to Catholicism. Damages to the embryo are considered gravely immoral and illicit. [62] Although the Catholic Church officially opposes abortion, surveys demonstrate that many Catholic people hold pro-choice views, whether due to the context of conception, stage of pregnancy, threat to the mother’s life, or for other reasons, demonstrating that practicing members can also accept some but not all tenets. [63]

Some major Jewish denominations, such as the Reform, Conservative, and Reconstructionist movements, are open to supporting ESC use or research as long as it is for saving a life. [64] Within Judaism, the Talmud, or study, gives personhood to the child at birth and emphasizes that life does not begin at conception: [65]

“If she is found pregnant, until the fortieth day it is mere fluid,” [66]

Whereas most religions prioritize the status of human embryos, the Halakah (Jewish religious law) states that to save one life, most other religious laws can be ignored because it is in pursuit of preservation. [67] Stem cell research is accepted due to application of these religious laws.

We recognize that all religions contain subsets and sects. The variety of environmental and cultural differences within religious groups requires further analysis to respect the flexibility of religious thoughts and practices. We make no presumptions that all cultures require notions of autonomy or morality as under the common morality theory , which asserts a set of universal moral norms that all individuals share provides moral reasoning and guides ethical decisions. [68] We only wish to show that the interaction with morality varies between cultures and countries.

III.     A Flexible Ethical Approach

The plurality of different moral approaches described above demonstrates that there can be no universally acceptable uniform law for ESC on a global scale. Instead of developing one standard, flexible ethical applications must be continued. We recommend local guidelines that incorporate important cultural and ethical priorities.

While the Declaration of Helsinki is more relevant to people in clinical trials receiving ESC products, in keeping with the tradition of protections for research subjects, consent of the donor is an ethical requirement for ESC donation in many jurisdictions including the US, Canada, and Europe. [69] The Declaration of Helsinki provides a reference point for regulatory standards and could potentially be used as a universal baseline for obtaining consent prior to gamete or embryo donation.

For instance, in Columbia University’s egg donor program for stem cell research, donors followed standard screening protocols and “underwent counseling sessions that included information as to the purpose of oocyte donation for research, what the oocytes would be used for, the risks and benefits of donation, and process of oocyte stimulation” to ensure transparency for consent. [70] The program helped advance stem cell research and provided clear and safe research methods with paid participants. Though paid participation or covering costs of incidental expenses may not be socially acceptable in every culture or context, [71] and creating embryos for ESC research is illegal in many jurisdictions, Columbia’s program was effective because of the clear and honest communications with donors, IRBs, and related stakeholders.  This example demonstrates that cultural acceptance of scientific research and of the idea that an egg or embryo does not have personhood is likely behind societal acceptance of donating eggs for ESC research. As noted, many countries do not permit the creation of embryos for research.

Proper communication and education regarding the process and purpose of stem cell research may bolster comprehension and garner more acceptance. “Given the sensitive subject material, a complete consent process can support voluntary participation through trust, understanding, and ethical norms from the cultures and morals participants value. This can be hard for researchers entering countries of different socioeconomic stability, with different languages and different societal values. [72]

An adequate moral foundation in medical ethics is derived from the cultural and religious basis that informs knowledge and actions. [73] Understanding local cultural and religious values and their impact on research could help researchers develop humility and promote inclusion.

IV.     Concerns

Some may argue that if researchers all adhere to one ethics standard, protection will be satisfied across all borders, and the global public will trust researchers. However, defining what needs to be protected and how to define such research standards is very specific to the people to which standards are applied. We suggest that applying one uniform guide cannot accurately protect each individual because we all possess our own perceptions and interpretations of social values. [74] Therefore, the issue of not adjusting to the moral pluralism between peoples in applying one standard of ethics can be resolved by building out ethics models that can be adapted to different cultures and religions.

Other concerns include medical tourism, which may promote health inequities. [75] Some countries may develop and approve products derived from ESC research before others, compromising research ethics or drug approval processes. There are also concerns about the sale of unauthorized stem cell treatments, for example, those without FDA approval in the United States. Countries with robust research infrastructures may be tempted to attract medical tourists, and some customers will have false hopes based on aggressive publicity of unproven treatments. [76]

For example, in China, stem cell clinics can market to foreign clients who are not protected under the regulatory regimes. Companies employ a marketing strategy of “ethically friendly” therapies. Specifically, in the case of Beike, China’s leading stem cell tourism company and sprouting network, ethical oversight of administrators or health bureaus at one site has “the unintended consequence of shifting questionable activities to another node in Beike's diffuse network.” [77] In contrast, Jordan is aware of stem cell research’s potential abuse and its own status as a “health-care hub.” Jordan’s expanded regulations include preserving the interests of individuals in clinical trials and banning private companies from ESC research to preserve transparency and the integrity of research practices. [78]

The social priorities of the community are also a concern. The ISSCR explicitly states that guidelines “should be periodically revised to accommodate scientific advances, new challenges, and evolving social priorities.” [79] The adaptable ethics model extends this consideration further by addressing whether research is warranted given the varying degrees of socioeconomic conditions, political stability, and healthcare accessibilities and limitations. An ethical approach would require discussion about resource allocation and appropriate distribution of funds. [80]

While some religions emphasize the sanctity of life from conception, which may lead to public opposition to ESC research, others encourage ESC research due to its potential for healing and alleviating human pain. Many countries have special regulations that balance local views on embryonic personhood, the benefits of research as individual or societal goods, and the protection of human research subjects. To foster understanding and constructive dialogue, global policy frameworks should prioritize the protection of universal human rights, transparency, and informed consent. In addition to these foundational global policies, we recommend tailoring local guidelines to reflect the diverse cultural and religious perspectives of the populations they govern. Ethics models should be adapted to local populations to effectively establish research protections, growth, and possibilities of stem cell research.

For example, in countries with strong beliefs in the moral sanctity of embryos or heavy religious restrictions, an adaptive model can allow for discussion instead of immediate rejection. In countries with limited individual rights and voice in science policy, an adaptive model ensures cultural, moral, and religious views are taken into consideration, thereby building social inclusion. While this ethical consideration by the government may not give a complete voice to every individual, it will help balance policies and maintain the diverse perspectives of those it affects. Embracing an adaptive ethics model of ESC research promotes open-minded dialogue and respect for the importance of human belief and tradition. By actively engaging with cultural and religious values, researchers can better handle disagreements and promote ethical research practices that benefit each society.

This brief exploration of the religious and cultural differences that impact ESC research reveals the nuances of relative ethics and highlights a need for local policymakers to apply a more intense adaptive model.

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[18] Oosthuizen, H. (2013). Legal and Ethical Issues in Stem Cell Research in South Africa. In: Beran, R. (eds) Legal and Forensic Medicine. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-32338-6_80 , see also: Gaobotse G (2018) Stem Cell Research in Africa: Legislation and Challenges. J Regen Med 7:1. doi: 10.4172/2325-9620.1000142

[19] United States Bureau of Citizenship and Immigration Services. (1998). Tunisia: Information on the status of Christian conversions in Tunisia . UNHCR Web Archive. https://webarchive.archive.unhcr.org/20230522142618/https://www.refworld.org/docid/3df0be9a2.html

[20] Gaobotse, G. (2018) Stem Cell Research in Africa: Legislation and Challenges. J Regen Med 7:1. doi: 10.4172/2325-9620.1000142

[21] Kooli, C. Review of assisted reproduction techniques, laws, and regulations in Muslim countries.  Middle East Fertil Soc J   24 , 8 (2020). https://doi.org/10.1186/s43043-019-0011-0 ; Gaobotse, G. (2018) Stem Cell Research in Africa: Legislation and Challenges. J Regen Med 7:1. doi: 10.4172/2325-9620.1000142

[22] Pang M. C. (1999). Protective truthfulness: the Chinese way of safeguarding patients in informed treatment decisions. Journal of medical ethics , 25(3), 247–253. https://doi.org/10.1136/jme.25.3.247

[23] Wang, L., Wang, F., & Zhang, W. (2021). Bioethics in China’s biosecurity law: Forms, effects, and unsettled issues. Journal of law and the biosciences , 8(1).  https://doi.org/10.1093/jlb/lsab019 https://academic.oup.com/jlb/article/8/1/lsab019/6299199

[24] Wang, Y., Xue, Y., & Guo, H. D. (2022). Intervention effects of traditional Chinese medicine on stem cell therapy of myocardial infarction.  Frontiers in pharmacology ,  13 , 1013740. https://doi.org/10.3389/fphar.2022.1013740

[25] Li, X.-T., & Zhao, J. (2012). Chapter 4: An Approach to the Nature of Qi in TCM- Qi and Bioenergy. In Recent Advances in Theories and Practice of Chinese Medicine (p. 79). InTech.

[26] Luo, D., Xu, Z., Wang, Z., & Ran, W. (2021). China's Stem Cell Research and Knowledge Levels of Medical Practitioners and Students.  Stem cells international ,  2021 , 6667743. https://doi.org/10.1155/2021/6667743

[27] Luo, D., Xu, Z., Wang, Z., & Ran, W. (2021). China's Stem Cell Research and Knowledge Levels of Medical Practitioners and Students.  Stem cells international ,  2021 , 6667743. https://doi.org/10.1155/2021/6667743

[28] Zhang, J. Y. (2017). Lost in translation? accountability and governance of Clinical Stem Cell Research in China. Regenerative Medicine , 12 (6), 647–656. https://doi.org/10.2217/rme-2017-0035

[29] Wang, L., Wang, F., & Zhang, W. (2021). Bioethics in China’s biosecurity law: Forms, effects, and unsettled issues. Journal of law and the biosciences , 8(1).  https://doi.org/10.1093/jlb/lsab019 https://academic.oup.com/jlb/article/8/1/lsab019/6299199

[30] Chen, H., Wei, T., Wang, H.  et al.  Association of China’s two-child policy with changes in number of births and birth defects rate, 2008–2017.  BMC Public Health   22 , 434 (2022). https://doi.org/10.1186/s12889-022-12839-0

[31] Azuma, K. Regulatory Landscape of Regenerative Medicine in Japan.  Curr Stem Cell Rep   1 , 118–128 (2015). https://doi.org/10.1007/s40778-015-0012-6

[32] Harris, R. (2005, May 19). Researchers Report Advance in Stem Cell Production . NPR. https://www.npr.org/2005/05/19/4658967/researchers-report-advance-in-stem-cell-production

[33] Park, S. (2012). South Korea steps up stem-cell work.  Nature . https://doi.org/10.1038/nature.2012.10565

[34] Resnik, D. B., Shamoo, A. E., & Krimsky, S. (2006). Fraudulent human embryonic stem cell research in South Korea: lessons learned.  Accountability in research ,  13 (1), 101–109. https://doi.org/10.1080/08989620600634193 .

[35] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: interviews with researchers from Saudi Arabia. BMC medical ethics, 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6

[36] Association for the Advancement of Blood and Biotherapies.  https://www.aabb.org/regulatory-and-advocacy/regulatory-affairs/regulatory-for-cellular-therapies/international-competent-authorities/saudi-arabia

[37] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: Interviews with researchers from Saudi Arabia.  BMC medical ethics ,  21 (1), 35. https://doi.org/10.1186/s12910-020-00482-6

[38] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: Interviews with researchers from Saudi Arabia. BMC medical ethics , 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6

Culturally, autonomy practices follow a relational autonomy approach based on a paternalistic deontological health care model. The adherence to strict international research policies and religious pillars within the regulatory environment is a great foundation for research ethics. However, there is a need to develop locally targeted ethics approaches for research (as called for in Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: interviews with researchers from Saudi Arabia. BMC medical ethics, 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6), this decision-making approach may help advise a research decision model. For more on the clinical cultural autonomy approaches, see: Alabdullah, Y. Y., Alzaid, E., Alsaad, S., Alamri, T., Alolayan, S. W., Bah, S., & Aljoudi, A. S. (2022). Autonomy and paternalism in Shared decision‐making in a Saudi Arabian tertiary hospital: A cross‐sectional study. Developing World Bioethics , 23 (3), 260–268. https://doi.org/10.1111/dewb.12355 ; Bukhari, A. A. (2017). Universal Principles of Bioethics and Patient Rights in Saudi Arabia (Doctoral dissertation, Duquesne University). https://dsc.duq.edu/etd/124; Ladha, S., Nakshawani, S. A., Alzaidy, A., & Tarab, B. (2023, October 26). Islam and Bioethics: What We All Need to Know . Columbia University School of Professional Studies. https://sps.columbia.edu/events/islam-and-bioethics-what-we-all-need-know

[39] Ababneh, M. A., Al-Azzam, S. I., Alzoubi, K., Rababa’h, A., & Al Demour, S. (2021). Understanding and attitudes of the Jordanian public about clinical research ethics.  Research Ethics ,  17 (2), 228-241.  https://doi.org/10.1177/1747016120966779

[40] Ababneh, M. A., Al-Azzam, S. I., Alzoubi, K., Rababa’h, A., & Al Demour, S. (2021). Understanding and attitudes of the Jordanian public about clinical research ethics.  Research Ethics ,  17 (2), 228-241.  https://doi.org/10.1177/1747016120966779

[41] Dajani, R. (2014). Jordan’s stem-cell law can guide the Middle East.  Nature  510, 189. https://doi.org/10.1038/510189a

[42] Dajani, R. (2014). Jordan’s stem-cell law can guide the Middle East.  Nature  510, 189. https://doi.org/10.1038/510189a

[43] The EU’s definition of autonomy relates to the capacity for creating ideas, moral insight, decisions, and actions without constraint, personal responsibility, and informed consent. However, the EU views autonomy as not completely able to protect individuals and depends on other principles, such as dignity, which “expresses the intrinsic worth and fundamental equality of all human beings.” Rendtorff, J.D., Kemp, P. (2019). Four Ethical Principles in European Bioethics and Biolaw: Autonomy, Dignity, Integrity and Vulnerability. In: Valdés, E., Lecaros, J. (eds) Biolaw and Policy in the Twenty-First Century. International Library of Ethics, Law, and the New Medicine, vol 78. Springer, Cham. https://doi.org/10.1007/978-3-030-05903-3_3

[44] Council of Europe. Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (ETS No. 164) https://www.coe.int/en/web/conventions/full-list?module=treaty-detail&treatynum=164 (forbidding the creation of embryos for research purposes only, and suggests embryos in vitro have protections.); Also see Drabiak-Syed B. K. (2013). New President, New Human Embryonic Stem Cell Research Policy: Comparative International Perspectives and Embryonic Stem Cell Research Laws in France.  Biotechnology Law Report ,  32 (6), 349–356. https://doi.org/10.1089/blr.2013.9865

[45] Rendtorff, J.D., Kemp, P. (2019). Four Ethical Principles in European Bioethics and Biolaw: Autonomy, Dignity, Integrity and Vulnerability. In: Valdés, E., Lecaros, J. (eds) Biolaw and Policy in the Twenty-First Century. International Library of Ethics, Law, and the New Medicine, vol 78. Springer, Cham. https://doi.org/10.1007/978-3-030-05903-3_3

[46] Tomuschat, C., Currie, D. P., Kommers, D. P., & Kerr, R. (Trans.). (1949, May 23). Basic law for the Federal Republic of Germany. https://www.btg-bestellservice.de/pdf/80201000.pdf

[47] Regulation of Stem Cell Research in Germany . Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-germany

[48] Regulation of Stem Cell Research in Finland . Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-finland

[49] Regulation of Stem Cell Research in Spain . Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-spain

[50] Some sources to consider regarding ethics models or regulatory oversights of other cultures not covered:

Kara MA. Applicability of the principle of respect for autonomy: the perspective of Turkey. J Med Ethics. 2007 Nov;33(11):627-30. doi: 10.1136/jme.2006.017400. PMID: 17971462; PMCID: PMC2598110.

Ugarte, O. N., & Acioly, M. A. (2014). The principle of autonomy in Brazil: one needs to discuss it ...  Revista do Colegio Brasileiro de Cirurgioes ,  41 (5), 374–377. https://doi.org/10.1590/0100-69912014005013

Bharadwaj, A., & Glasner, P. E. (2012). Local cells, global science: The rise of embryonic stem cell research in India . Routledge.

For further research on specific European countries regarding ethical and regulatory framework, we recommend this database: Regulation of Stem Cell Research in Europe . Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-europe   

[51] Klitzman, R. (2006). Complications of culture in obtaining informed consent. The American Journal of Bioethics, 6(1), 20–21. https://doi.org/10.1080/15265160500394671 see also: Ekmekci, P. E., & Arda, B. (2017). Interculturalism and Informed Consent: Respecting Cultural Differences without Breaching Human Rights.  Cultura (Iasi, Romania) ,  14 (2), 159–172.; For why trust is important in research, see also: Gray, B., Hilder, J., Macdonald, L., Tester, R., Dowell, A., & Stubbe, M. (2017). Are research ethics guidelines culturally competent?  Research Ethics ,  13 (1), 23-41.  https://doi.org/10.1177/1747016116650235

[52] The Qur'an  (M. Khattab, Trans.). (1965). Al-Mu’minun, 23: 12-14. https://quran.com/23

[53] Lenfest, Y. (2017, December 8). Islam and the beginning of human life . Bill of Health. https://blog.petrieflom.law.harvard.edu/2017/12/08/islam-and-the-beginning-of-human-life/

[54] Aksoy, S. (2005). Making regulations and drawing up legislation in Islamic countries under conditions of uncertainty, with special reference to embryonic stem cell research. Journal of Medical Ethics , 31: 399-403.; see also: Mahmoud, Azza. "Islamic Bioethics: National Regulations and Guidelines of Human Stem Cell Research in the Muslim World." Master's thesis, Chapman University, 2022. https://doi.org/10.36837/ chapman.000386

[55] Rashid, R. (2022). When does Ensoulment occur in the Human Foetus. Journal of the British Islamic Medical Association , 12 (4). ISSN 2634 8071. https://www.jbima.com/wp-content/uploads/2023/01/2-Ethics-3_-Ensoulment_Rafaqat.pdf.

[56] Sivaraman, M. & Noor, S. (2017). Ethics of embryonic stem cell research according to Buddhist, Hindu, Catholic, and Islamic religions: perspective from Malaysia. Asian Biomedicine,8(1) 43-52.  https://doi.org/10.5372/1905-7415.0801.260

[57] Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.),  Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues  (pp. 79-94). Berkeley: University of California Press.  https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005

[58] Lecso, P. A. (1991). The Bodhisattva Ideal and Organ Transplantation.  Journal of Religion and Health ,  30 (1), 35–41. http://www.jstor.org/stable/27510629 ; Bodhisattva, S. (n.d.). The Key of Becoming a Bodhisattva . A Guide to the Bodhisattva Way of Life. http://www.buddhism.org/Sutras/2/BodhisattvaWay.htm

[59] There is no explicit religious reference to when life begins or how to conduct research that interacts with the concept of life. However, these are relevant verses pertaining to how the fetus is viewed. (( King James Bible . (1999). Oxford University Press. (original work published 1769))

Jerimiah 1: 5 “Before I formed thee in the belly I knew thee; and before thou camest forth out of the womb I sanctified thee…”

In prophet Jerimiah’s insight, God set him apart as a person known before childbirth, a theme carried within the Psalm of David.

Psalm 139: 13-14 “…Thou hast covered me in my mother's womb. I will praise thee; for I am fearfully and wonderfully made…”

These verses demonstrate David’s respect for God as an entity that would know of all man’s thoughts and doings even before birth.

[60] It should be noted that abortion is not supported as well.

[61] The Vatican. (1987, February 22). Instruction on Respect for Human Life in Its Origin and on the Dignity of Procreation Replies to Certain Questions of the Day . Congregation For the Doctrine of the Faith. https://www.vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_19870222_respect-for-human-life_en.html

[62] The Vatican. (2000, August 25). Declaration On the Production and the Scientific and Therapeutic Use of Human Embryonic Stem Cells . Pontifical Academy for Life. https://www.vatican.va/roman_curia/pontifical_academies/acdlife/documents/rc_pa_acdlife_doc_20000824_cellule-staminali_en.html ; Ohara, N. (2003). Ethical Consideration of Experimentation Using Living Human Embryos: The Catholic Church’s Position on Human Embryonic Stem Cell Research and Human Cloning. Department of Obstetrics and Gynecology . Retrieved from https://article.imrpress.com/journal/CEOG/30/2-3/pii/2003018/77-81.pdf.

[63] Smith, G. A. (2022, May 23). Like Americans overall, Catholics vary in their abortion views, with regular mass attenders most opposed . Pew Research Center. https://www.pewresearch.org/short-reads/2022/05/23/like-americans-overall-catholics-vary-in-their-abortion-views-with-regular-mass-attenders-most-opposed/

[64] Rosner, F., & Reichman, E. (2002). Embryonic stem cell research in Jewish law. Journal of halacha and contemporary society , (43), 49–68.; Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.),  Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues  (pp. 79-94). Berkeley: University of California Press.  https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005

[65] Schenker J. G. (2008). The beginning of human life: status of embryo. Perspectives in Halakha (Jewish Religious Law).  Journal of assisted reproduction and genetics ,  25 (6), 271–276. https://doi.org/10.1007/s10815-008-9221-6

[66] Ruttenberg, D. (2020, May 5). The Torah of Abortion Justice (annotated source sheet) . Sefaria. https://www.sefaria.org/sheets/234926.7?lang=bi&with=all&lang2=en

[67] Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.),  Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues  (pp. 79-94). Berkeley: University of California Press.  https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005

[68] Gert, B. (2007). Common morality: Deciding what to do . Oxford Univ. Press.

[69] World Medical Association (2013). World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA , 310(20), 2191–2194. https://doi.org/10.1001/jama.2013.281053 Declaration of Helsinki – WMA – The World Medical Association .; see also: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1979).  The Belmont report: Ethical principles and guidelines for the protection of human subjects of research . U.S. Department of Health and Human Services.  https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html

[70] Zakarin Safier, L., Gumer, A., Kline, M., Egli, D., & Sauer, M. V. (2018). Compensating human subjects providing oocytes for stem cell research: 9-year experience and outcomes.  Journal of assisted reproduction and genetics ,  35 (7), 1219–1225. https://doi.org/10.1007/s10815-018-1171-z https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6063839/ see also: Riordan, N. H., & Paz Rodríguez, J. (2021). Addressing concerns regarding associated costs, transparency, and integrity of research in recent stem cell trial. Stem Cells Translational Medicine , 10 (12), 1715–1716. https://doi.org/10.1002/sctm.21-0234

[71] Klitzman, R., & Sauer, M. V. (2009). Payment of egg donors in stem cell research in the USA.  Reproductive biomedicine online ,  18 (5), 603–608. https://doi.org/10.1016/s1472-6483(10)60002-8

[72] Krosin, M. T., Klitzman, R., Levin, B., Cheng, J., & Ranney, M. L. (2006). Problems in comprehension of informed consent in rural and peri-urban Mali, West Africa.  Clinical trials (London, England) ,  3 (3), 306–313. https://doi.org/10.1191/1740774506cn150oa

[73] Veatch, Robert M.  Hippocratic, Religious, and Secular Medical Ethics: The Points of Conflict . Georgetown University Press, 2012.

[74] Msoroka, M. S., & Amundsen, D. (2018). One size fits not quite all: Universal research ethics with diversity.  Research Ethics ,  14 (3), 1-17.  https://doi.org/10.1177/1747016117739939

[75] Pirzada, N. (2022). The Expansion of Turkey’s Medical Tourism Industry.  Voices in Bioethics ,  8 . https://doi.org/10.52214/vib.v8i.9894

[76] Stem Cell Tourism: False Hope for Real Money . Harvard Stem Cell Institute (HSCI). (2023). https://hsci.harvard.edu/stem-cell-tourism , See also: Bissassar, M. (2017). Transnational Stem Cell Tourism: An ethical analysis.  Voices in Bioethics ,  3 . https://doi.org/10.7916/vib.v3i.6027

[77] Song, P. (2011) The proliferation of stem cell therapies in post-Mao China: problematizing ethical regulation,  New Genetics and Society , 30:2, 141-153, DOI:  10.1080/14636778.2011.574375

[78] Dajani, R. (2014). Jordan’s stem-cell law can guide the Middle East.  Nature  510, 189. https://doi.org/10.1038/510189a

[79] International Society for Stem Cell Research. (2024). Standards in stem cell research . International Society for Stem Cell Research. https://www.isscr.org/guidelines/5-standards-in-stem-cell-research

[80] Benjamin, R. (2013). People’s science bodies and rights on the Stem Cell Frontier . Stanford University Press.

Mifrah Hayath

SM Candidate Harvard Medical School, MS Biotechnology Johns Hopkins University

Olivia Bowers

MS Bioethics Columbia University (Disclosure: affiliated with Voices in Bioethics)

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CAMPUS NEWS: MAY 16, 2024

Coastal research, graduate student wins coastal protection research grant.

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University of New Orleans student Lydia DiPaola, who is pursuing a master’s degree in biological sciences, is a recipient of a research fellowship.

University of New Orleans graduate student Lydia DiPaola is the recipient of a one-year $10,000 fellowship, which will fund her research to address high priority needs within Louisiana’s coastal environment. She is the first to earn a Graduate Interjurisdictional Research Fellowship, a joint effort of Louisiana Sea Grant and Louisiana Space Grant, along with the North Carolina Sea and Space Grant Programs.

DiPaola is a master’s degree student in biological sciences at UNO. The Tucson, Arizona native earned a bachelor’s degree in biological sciences from Arizona State University. Her project is titled “Monitoring Biotic and Abiotic Responses to a Shoreline Protection Barrier Project in Jean Lafitte National Park.” Nicola Anthony, professor of biological sciences, is DiPaola’s faculty adviser.

To restore 50 acres of submerged aquatic vegetation lost since the Deepwater Horizon Oil Spill in 2010, the Jean Lafitte National Park and Historic Preserve is building a 2.2-mile-long shoreline protection barrier along Lake Salvador. Completion is expected this summer. Submerged aquatic vegetation beds are important wetland features that provide food and shelter for local aquatic species, stabilize sediments, filter water of contaminants and directly reduce erosion and wave action.

The barrier’s construction is expected to have short-term adverse impacts on water quality and submerged aquatic vegetation in the area, but benefit wetland communities in the long-term. DiPaola will monitor vegetation diversity and coverage, fish community assemblages, water quality and shoreline erosion and/or accretion for one year following the barrier’s construction. Her immediate post-construction monitoring will help managers respond effectively to interim environmental impacts in order to address longer-term environmental injuries caused by the Deepwater Horizon disaster.

The work is being carried out in collaboration with Erin Cox, assistant professor of biological sciences; Martin O’Connell, professor of earth and environmental sciences; and Julie Whitbeck with the Jean Lafitte National Historical Park and Preserve.

The transregional aspect of the program is to promote a greater understanding of the issues researched and create professional development opportunities for the funded graduate students. Fellowship recipients use data from a variety of archives and the remote sensing capabilities available through the National Oceanic and Atmospheric Administration (NOAA) and the National Aeronautics and Space Administration (NASA) to address high priority needs within Louisiana’s nearshore environment.

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