Paula M. Lantz, Barbara A. Israel, Amy J. Schulz and Angela G. Reyes
Community-based participatory research (or CBPR) is an approach to research that consciously blurs the line between researchers and the “researched” (Gaventa 1981) or makes research subjects more than mere “objects” of research (Green and Mercer 2001; Stringer 2007; Minkler and Wallerstein 2008). CBPR is a collaborative approach to research that engages partners from a community—geographic or otherwise defined—in all phases of the research process, with a shared goal of producing knowledge that will be translated into action or positive social change for the community (Green et al. 1997; Israel et al. 1998, 2013; Israel, Coombe, and McGranaghan 2010). In the realm of public health, CBPR efforts often focus on improving community health status and/or reducing social disparities in health (Cook 2008; Mercer and Green 2008; Commission for the Social Determinants of Health 2008; Israel et al. 2013). As such, CBPR is critically important to social epidemiology and its goal of identifying, understanding, and modifying the social determinants of health in populations.
Community-based participatory research has a long history as a research approach that aims to improve the well-being of people and their communities; it is not a new concept or approach (Freire 1970, 1973; Wallerstein and Duran 2008). Nonetheless, CBPR has received increased attention in public health research and practice (O'Fallon and Dearry 2002; Minkler and Wallerstein 2008; National Institute on Minority Health and Health Disparities 2011). For example, the Institute of Medicine has named CBPR as one of eight named competency areas essential for breadth in public health training (Viswanathan et al. 2004). In addition, foundation and government interest in and funding for health-related participatory research has increased substantially over the past decade (Mercer and Green 2008; Cargo and Mercer 2008).
CBPR is often discussed in the context of intervention or evaluation research (involving both experimental and quasi-experimental designs), where community members are fully engaged in the identification of a problem and the design and evaluation of potential interventions. As in the following description, however, CBPR has also been used to address basic research questions. As such, social epidemiologists engaged in observational research regarding health inequities and the social determinants of health can draw from the principles and processes of CBPR in their work as well.
In this chapter, we provide an overview of CBPR and its relevance to social epidemiology as a critical subfield of public health. We begin by defining CBPR and presenting an overview of what has been written about CBPR “principles” (or characteristics, grounded in theory and practice, about the way in which this approach to research ought to proceed). We then discuss the relevance of CBPR to social epidemiology, including what to consider when deciding whether or not to use a CBPR approach in a particular research endeavor. Next, we present some general guidance regarding the process of CBPR, including a discussion of some common challenges and facilitating factors that have been learned by those engaged in this type of work. Finally, we conclude by offering our perspective on some key issues and debates regarding CBPR in public health research.
There are many partnership approaches to research in different disciplines variously referred to as “action research” (Reason and Bradbury, 2001, 2008; Stringer 2007), “participatory research” (deKoning and Martin 1996; Green et al. 1995; Hall 1992; Park 1993; Tandon 1996), “participatory action research” (Whyte 1991), and “participatory community research” (Jason et al. 2004). Although these approaches have their differences, they all emphasize conducting research that actively involves members of the group or community being studied in the research process. Within the field of public health, the term “community-based participatory research” has been used increasingly to represent such collaborative approaches to research (Israel et al. 2013; Minkler and Wallerstein 2008). While there is no one definition, in our work we have defined CBPR as a partnership approach to research that equitably involves diverse partners (e.g., academic researchers, health professionals, community members) in all steps of the research process, and in which influence, decision-making, and ownership are shared (Israel et al. 1998, 2003, 2008, 2013). The overall goal of CBPR is to increase both knowledge and understanding of a given phenomenon (i.e., address basic research questions) and to apply the knowledge gained to guide the development of interventions, policy, and social change aimed at improving the health of community members (Israel et al. 1998, 2013). The term “participatory” is critical to this approach. It emphasizes the participatory processes involved and differentiates CBPR from other forms of community research, where the community is seen as a setting for conducting research but not an active partner in the process.
There is no one set of principles that will be applicable for all CBPR partnerships. Rather, the process of determining core values and principles that will guide collaborative efforts is essential in the development of individual partnerships. Recognizing this, we present below a synthesis of nine CBPR principles that have been discussed in the literature as useful for partnerships seeking to balance power and influence, research and practice. These principles reflect considerable experience in conducting participatory forms of research and are offered to help inform other partnerships as they develop sets of principles that are applicable to their unique contexts. The nine principles are summarized in Table 8.1 and explicated below (see Israel et al. 1998, 2008, 2013 and Israel, Coombe, and McGranaghan 2010 for more detailed examinations and discussions).
TABLE 8.1 PRINCIPLES OF COMMUNITY-BASED PARTICIPATORY RESEARCH
| Principle 1: | CBPR recognizes community as a unit of identity. |
| Principle 2: | CBPR builds on strengths and resources within the community. |
| Principle 3: | CBPR facilitates a collaborative, equitable partnership in all phases of research, involving an empowering and power-sharing process that attends to social inequalities. |
| Principle 4: | CBPR promotes co-learning and capacity building among all partners. |
| Principle 5: | CBPR integrates and achieves a balance between knowledge generation and intervention for the mutual benefit of all partners. |
| Principle 6: | CBPR focuses on the local relevance of public health problems and ecological perspectives that attend to the multiple determinants of health. |
| Principle 7: | CBPR involves systems development through a cyclical and iterative process. |
| Principle 8: | CBPR disseminates results to all partners and involves them in the wider dissemination process. |
| Principle 9: | CBPR involves a long-term process and commitment to sustainability. |
Adapted from Israel et al. [1998, 2003, 2013].
As described above, community-based participatory research is not a specific method or research design. Rather, CBPR is an approach to or a process by which research using different types of designs and methods can proceed. As an approach to identifying research questions, attempting to answer them, and using the results for positive change, CBPR is of great relevance to social epidemiology in several significant ways. CBPR is applicable to a plethora of research questions, study designs, and data collection efforts (both quantitative and qualitative), not only community intervention research (see Viswanathan and colleagues (2004) for a review of 30 health-related “non-interventional studies” that used a CBPR approach). In addition, CBPR is an approach to research that is more accepted by communities of color and other marginalized groups who rarely see benefits from the research conducted in their communities and—for good reasons—have serious mistrust of researchers and the institutions they represent (Chavez et al., 2008; Wallerstein and Duran 2008). Thus, social epidemiologists engaged in a wide variety of research endeavors can do so using a CBPR approach.
We see four key types of social epidemiological research in which a CBPR approach could be implemented. First, CBPR can be useful in descriptive research that attempts to identify or elucidate social determinants of health. A wide variety of researchers engage in work that seeks to identify and explain social factors that promote and inhibit health. We are not suggesting that all of them need to use a CBPR approach in their research. For instance, is a CBPR approach called for if a social epidemiologist is going to analyze data from the National Health Interview Survey, a statewide tumor registry, or some other secondary data source? Having members of the population from which the data were gathered participate in identifying salient research questions, assessing data collection methods, and assisting in interpreting and disseminating the results could, in fact, improve the research effort. An example of a CBPR study using secondary data analysis is the Los Angeles Collaborative for Environmental Health and Justice, a group that used a participatory process to collectively design research projects, to analyze and interpret secondary data, and to disseminate and translate the findings into a policy change/advocacy agenda (Morello-Frosch et al. 2013).
Nonetheless, if the research approach involves collecting new data or analyzing existing data from community members with the purpose of better understanding the relationship between various social and community factors and health status, using a CBPR approach has the potential to significantly inform and improve the project. If primary data collection is going to occur, members of the community in question can offer valuable insight and expertise regarding the issues or problems that are of priority in the community and regarding salient individual and community factors that might be investigated to better understand the priority problems. Community expertise can also provide useful direction regarding data collection strategies, operationalization of variables, and measurement approaches. For example, Zenk and colleagues (2013) describe specific contributions made by a CBPR partnership to the development of a neighborhood observational checklist, including the operationalization and interpretation of observed features of the local context. This included initial discussions about how best to observe vacant city lots in residential areas and record the amount of “dumped materials” in these spaces. Community members pointed out that residents often maintain such lots, keeping them free of dumped materials, mowing the grass, and planting flowers. In some cases, chairs and recreational equipment indicated residents' use of the space for social and recreational purposes. As a result of these discussions, more variables were added to the observational tool, reflecting a wider range of how vacant land is used than what has been captured by instruments used in previous studies.
Second, CBPR can also be a useful and productive approach in research attempting to understand or elucidate disparities in health status or health-related risk factors. Social epidemiologists often engage in research that seeks to understand and explain disparities in health and disease states or factors related to health. In this type of work, social epidemiologists often focus on populations that are disadvantaged or marginalized by socioeconomic position, race, ethnicity, or other social factors. The use of a CBPR approach ostensibly gives voice and power to these marginalized groups who are quite likely to have unique knowledge and valuable insights to contribute to the understanding of the causes and consequences of the disparities under investigation (Stoeker and Beckwith 1992; Mullings et al. 2001). Even if the research is purely descriptive (e.g., it is attempting to identify patterns and differentials in some phenomenon by race, ethnicity, or social class), a participatory approach can help to reframe or refocus the research questions in ways that improve the research. Researchers, whose perspectives might be constrained by disciplinary lenses or other academic biases, can be challenged by community partners to think “out of the box” in new and creative ways. Also, in accordance with the principle of co-learning and capacity-building, a CBPR approach to disparities research can serve to increase the knowledge or awareness of the existing causes and/or consequences of health disparities in a way that allows marginalized populations a voice in defining and creating knowledge about their own communities. This, in turn, serves the bigger goal of empowerment whereby communities are empowered to define or elucidate their own problems and the solutions to them (Freire 1970; Wallerstein and Duran 2008). Numerous studies have been conducted regarding social factors and processes related to health using a CBPR approach. See, for example, research carried out as part of the Eastside Village Health Worker Partnership in Detroit (Parker et al. 2001; Schulz et al. 2001; Becker et al. 2002; Israel et al. 2002; van Olphen et al. 2003b)
Third, social epidemiologists have also used a CBPR approach when conducting research to identify or define needs, problems, and assets in specific communities. It does not make intuitive sense to have people from outside of a community come into an area and define its issues, needs, or its assets, regardless of how skilled and well-intentioned they may be. Those who live and work in the community are likely to have key insights about the dynamics in a specific community that may be difficult for outsiders to identify or understand, at least initially. The strength of CBPR is that it fosters collaboration between those from within a community—with their knowledge, history, and commitment—and researchers who have strengths and assets themselves, including the time, resources, and expertise to engage in a systematic assessment of a community's issues and priorities. The new rules in the Patient Protection and Affordable Care Act regarding non-profit hospital reporting of community benefit to the Internal Revenue Service provide expanded opportunities for community-based needs assessments and interventions using a participatory model (Rosenbaum and Kindig 2012).
Wing (2002), Farquhar and Wing (2003), and Wing et al. (2008) described a case study in which a CBPR approach was used in community-driven environmental justice research in rural eastern North Carolina. The research was conducted in response to community members' concerns that corporate hog farming was producing air, water, and noise pollution that disproportionately affected low-income African American communities. An organized concerned citizens group partnered with county health department staff and academic researchers to conduct a quantitative analysis of the distribution of industrialized hog operations in the state. The results showed that “hog operations were far more common in low-income communities and communities of color, that this concentration was more extreme for hog operations owned or operated by large corporations than for independent operations, and that the pattern was only partly explained by differences in population density” (Farquhar and Wing 2003, p. 225). The study also found that hog operations were more likely to be located in places where a significant portion of the population got their drinking water from household wells (Wing 2002). A subsequent community survey (also using a CBPR approach) documented that residents living near hog operations had a significantly higher rate of headaches, sore throats, burning eyes, respiratory symptoms, and diarrhea; and they also reported differences in quality of life because of noxious odors (Wing 2002). The results of this CBPR effort, using a repeat measures longitudinal design integrating qualitative and quantitative methods, provided opportunities for community education and organizing (Wing et al. 2008).
Fourth, CBPR is an important approach in efforts to design, implement, and evaluate interventions and policies aimed at reducing the negative impact of particular social determinants of health or at reducing social inequalities in health (Springett 2003; Cook 2008; Mercer and Green 2008). Much of the published literature regarding CBPR involves examples of intervention research in which a participatory approach was used to identify a community need or problem; to design an intervention, programmatic, or policy response; to evaluate the intervention; and to make positive community change based on the research results. Just as community members are likely to be in the best position to define their own assets and needs, they are also likely to be the best judges of what types of interventions have the most potential in their communities. Community experts have the historical knowledge of programs or services that were tried in the past and what was likely to lead to past successes and challenges. Community involvement in intervention development and pilot testing provides essential information not only regarding the content of the intervention but also its cultural appropriateness and the manner in which it will be implemented. For example, community members might tell you that community nutrition classes have the potential to be well received but not if they are held at a specific municipal office as suggested, because of its location, because of negative attitudes toward the office based on widespread personal experiences or other legitimate reasons.
A growing number of examples of how CBPR has been used to design and evaluate an intervention can be found in the public health literature. This includes social epidemiological studies employing experimental research designs (Oakes 2004). Examples of intervention research using a CBPR approach include the following projects: HIV Testing and Counseling for Latina Women in Los Angeles (Flaskerud, Nyamathi, and Uman 1997; Flaskerud and Nyamathi 2000); Seattle Partners' adult vaccine intervention (Krieger et al. 2000); the Sierra Stanford Partnership in Northern California (Angell et al. 2003); the Center for Urban Epidemiological Studies' policy research to promote reintegration of drug users leaving jail in New York City (van Olphen et al. 2003a); and the Detroit Community Action Against Asthma intervention to improve children's asthma status (Parker et al. 2008). As another example, Lantz and colleagues (2003) described an evaluation in which staff and other representatives from Native American tribes and tribal consortia running federally funded women's cancer screening programs participated in all phases of a program evaluation, including the identification of evaluation priorities, data collection, and the interpretation and dissemination of results. While tribal representatives were not involved with the design of the national intervention, they were full partners in a participatory evaluation of their local programs. Lantz and colleagues (2003, p. 693) wrote that “Tribal representatives and program staff have stated that they would not have participated in this (evaluation) had a participatory process not been used…. The participatory research process led to ownership of the results within participating tribal programs, which in turn has enabled them to document successes, educate new staff, learn from other programs, and reach out to mentor new programs.”
The translation of research into policy and practice is the primary aim of much public health research and CBPR can facilitate this translation. For example, a Detroit-based CBPR partnership implemented a policy training project to bring CBPR and policy advocacy together with the explicit goal of addressing and eliminating health disparities (Israel et al. 2010). As another example, Tapp and Dulin (2010) promote the use of CBPR in practice-based research networks, which are groups of primary care practices with a commitment to improve quality of care through the investigation of questions that arise from community-based care. In another example, Tsui, Cho, and Freudenberg (2013) illustrate the use of CBPR in the context of community-based participatory policy work to change food-related policies in New York City.
As described above, there are many types of research in which social epidemiologists engage that could follow principles of CBPR. In addition, it is important to underscore that there are many different models regarding participation and how the participatory process within CBPR studies is implemented in practice (Green et al. 1995; Minkler and Wallerstein 2008) For example, Stoeker (2003) suggests that a researcher can play the role of initiator, consultant, or collaborator in a project, depending upon the situation and preferences of the community. Thus, there is no simple set of criteria one can use to decide whether or not a specific type of CBPR approach is essential, merely advisable, or not necessary for a particular research endeavor. Nonetheless, we can offer a few points to consider in deciding whether or not to use a CBPR approach.
First, research that involves needs assessment or the identification of resources in a specific community can greatly benefit from approaches that engage community residents in the research process. Given that academically based researchers (including social epidemiologists) are not often from the community in which they are conducting research, they may not have an in-depth understanding of the local culture and community relations and dynamics—understandings that are central to social epidemiology, with its focus on how social processes and community conditions can influence health. Anthropologists, sociologists, epidemiologists, health educators, and other public health researchers have long recognized the value of key informants and insider knowledge in developing an understanding of community dynamics, including those that impact health (Singer 1993, 1994; Steuart 1993). Actively engaging community residents in efforts to understand key social phenomenon related to health extends opportunities for dialogue and the exchange of insights and information regarding community concerns, social relationships, culture, and other contextual factors that influence the health of residents (Eng et al. 2013; Schensul, Berg, and Nair 2013).
Second (and similarly), research focused on the development of interventions to address health concerns within local communities can also benefit from the active engagement of community members, whose perspectives regarding the local culture, community dynamics, and structural conditions that underlie health concerns are extremely valuable in considering how to bring about change. These insights are not limited to an understanding of within-community dynamics, but can equally inform an understanding of local areas within broader social contexts (e.g., understanding political relationships between urban communities and surrounding suburban neighborhoods) (Schulz et al. 2011). In addition, research seeking to evaluate the process or impact of intervention efforts can often benefit substantially by engaging community observers or participants in the prioritization of evaluation questions, the design of the evaluation, and in analysis and interpretation/implications drawn from the results (Israel et al. 2003).
At times, social epidemiologists might find that they will not be permitted access to or entrée into a community without giving community members a voice in or shared power regarding the project. For example, many Native American tribes are now requiring that a full participatory approach be used in any research regarding their people, land, or other resources, such that tribal people have a voice in and control over the research questions being investigated, the methods being used, the interpretation of results, and the dissemination of findings (Fisher and Ball 2003; Mariella et al. 2009). Green and Mercer (2001) describe the “push from communities” demanding that research “show greater sensitivity to communities' perceptions, needs and unique circumstances,” and how CBPR is a critical part of how researchers are responding to this demand. In addition, a growing number of funders are developing funding mechanisms requiring that a CBPR approach is used to foster true community involvement and a convergence between research and community participation (Minkler et al. 2003; Mercer and Green 2008; NIMHD 2011). As such, it is becoming more common for researchers seeking funds for community-based public health projects to provide evidence in their proposal of a committed partnership and of the adoption of a participatory approach.
Finally, it is important to remember that social epidemiologists rarely conduct research simply for the sake of research. Rather, research is a means to a bigger end, which often includes the production of knowledge from which action can be taken to improve health and/or to reduce health status disparities. Thus, social epidemiologists should be able to articulate the bigger goals for a research project under consideration. If these goals include fostering positive changes in community health and well-being and/or expanding community capacity to produce knowledge and action, then it is essential to consider a CBPR approach (Gaventa 1993; Stoeker 2003; Reason and Bradbury 2006, 2008).
Main Steps in the CBPR Process. Community-based participatory research and its analogs (participatory action research, participatory evaluation research) have been described as part of a cyclic process that includes problem framing, planning, action, observation, and reflection, toward the end of more effective practice (Eng et al. 2013; Israel et al. 1998; King 1998; King and Lonnquist 1992; Nunneley, Orton, and King 1997). The cyclical nature of the process allows knowledge and understanding to emerge over time, and emphasizes that this process continually builds on, critiques, and extends prior knowledge and action. There are several steps or stages that can be identified within this ongoing process, regardless of the specific focus of the research and intervention efforts. These include the process of forming a partnership and maintaining it over time; assessing the community and its dynamics; identifying local health concerns; taking action to address identified concerns; and documenting or evaluating the effectiveness of the partnership itself and its actions to address health issues (Israel et al. 2001, 2013; Becker et al. 2013).
The first step in the process—creating and maintaining a partnership—involves a number of issues, including the identification of the “community” (e.g., geographic or a community of identity and its boundaries) and the determination of who will represent that community. Attention is warranted to whether community representatives are formal or informal leaders, are self-identified or identified through other means (e.g., interviews with community residents), and the extent to which subgroups within the community are represented, with particular attention to race, class, gender, language, and other factors that may reflect dimensions of power and influence within the community and between community representatives, academic partners, and other members of the partnership. All of these factors influence the partnership dynamics as well as the effectiveness of the partnership in addressing research questions.
Creating and maintaining a partnership also involves attention to the process through which members will interact with each other (Becker et al. 2013; Israel et al. 2001; Butterfoss, 2009; Jagosh et al. 2012; Yonas et al. 2013). The process of creating a shared vision of the work that the partnership will undertake is essential to effective collaboration (Johnson and Johnson 2003). Attention to mechanisms that enable all partners to be involved in this process without overburdening them, and to the development and maintenance of trust and open communication are central to the functioning of effective partnerships (Becker et al. 2013; Sofaer 2000; Lasker, Weiss, and Miller 2001; Lasker and Weiss 2003; Johnson and Johnson 2003; Schulz, Israel, and Lantz 2003; Israel et al. 2006, 2013; Jagosh et al. 2012). Researchers seeking to effectively engage community residents in analyzing, addressing, and evaluating efforts to address health challenges within their communities must be self-reflective about issues of race, gender, class, power, and privilege. Furthermore, they must develop both the skills and the readiness to address tensions and differences of perspective that may arise (Israel et al. 2008; Minkler and Wallerstein 2008; Chavez et al. 2008; Nyden and Wiewel 1992).
The ability of partnerships to effectively resolve conflicts and to address issues of power and equity is linked to trust and requires the demonstration of trustworthiness on the part of partners—particularly, although not limited to, those from outside the community. Methods for addressing these and other issues of partnership formation and maintenance have been discussed in some detail elsewhere (Jagosh et al. 2012; Duran et al. 2013; Becker et al. 2013; Johnson and Johnson 2003; Israel et al. 2008, 2013; Yonas et al. 2013). The cyclical nature of the CBPR process described above highlights the reality that these and other partnership issues are not limited to the initial stages of partnership formation. Rather, researchers engaged in CBPR must be prepared to attend to such issues throughout the life of CBPR efforts.
A second stage of CBPR is that of assessing the community itself, including, for example, its history, relationships between groups within the community and between the community and neighboring communities, and the values, language, and communication and helping patterns of its residents (Minkler 2004; Schulz et al. 2002; Eng et al. 2013; Kretzmann and McKnight 1993; Schensul, Berg, and Nair 2013; Steuart 1993). Within CBPR projects that have action or change as a priority, this stage of the process emphasizes attributes or dynamics within the community that may facilitate change (e.g., identification of formal and informal leaders, community organizations, or other resources within the community). During this phase of the process, partners may draw upon multiple data collection methods, including, for example, participant observation, in-depth interviews, ethnography, and review of historical documents, newspapers, and other media (Eng et al. 2013; Schensul, Berg, and Nair 2013; Schulz, Israel, and Lantz 2003). Like the stage of forming and maintaining the partnership, partners may initiate this process at the beginning of a CBPR effort, but continue to increase understanding of the life and dynamics of the community over time (Israel et al. 2013; Jagosh et al. 2012).
Partners engaged in participatory research must also work together to define the research questions that will be addressed by the partnership. In this third stage, partners identify priority topics of concern as well as the specific research questions to be addressed. This process can be informed by existing data (e.g., community morbidity or mortality records) and priorities and concerns expressed by community key informants, systematic surveys of community residents, and other data collection methods alone or in combination (Israel et al. 2013; Christopher et al. 2013; Kieffer et al. 2013; Berry et al. 2013; Krieger, Allen, and Takaro 2013). Key here is the active involvement of partners from various perspectives and social locations, which helps to ensure that the process reflects the collective vision of the partners; is consistent with community norms, values, and interaction patterns; and benefits from the insights of community residents.
A fourth stage in the participatory research process involves the mutual commitment to take action to address the concerns that are identified through the preceding stages. Such actions can take many forms, including the design of specific individual or group interventions; efforts to promote community change; dissemination of study results within appropriate local, state, regional, or national venues; and efforts to change local, regional. or national policies that impact health. For example, the Community Action Against Asthma project, a community-based participatory research effort in Detroit aimed at gaining an increased understanding of environmental triggers of childhood asthma, designed and implemented a family and household intervention that sought to reduce triggers in the home and alleviate asthma symptoms in children. At the same time, the project undertook basic research designed to assess the impact of air quality on asthma. Based on the finding that airborne particulate matter had a significant effect on children's asthma, the project engaged in community organizing to influence land-use decisions in the neighborhoods most negatively affected by air pollution. These efforts integrated the information gathered through community assessment as well as basic epidemiological research and were undertaken collaboratively by all members of the partnership, as they worked together to develop and implement evidence-based interventions to improve health (Parker et al. 2003, 2008; Keeler et al. 2002; Yip et al. 2004).
The fifth stage involves the ongoing evaluation of both the partnership process (e.g., the extent to which the partnership is following CBPR principles) and the extent to which CBPR efforts are successful in attaining research, intervention, and policy goals. Such evaluation is an important means by which members of the partnership—and external parties as well—may assess their impact or effectiveness. It is generally possible to determine whether and how well a partnership is achieving its process goals and intermediate outcomes long before it is possible to determine the partnership's impact on health outcomes, and such information can be used by the partnership to enhance its efforts and thereby the accomplishment of its long-term goals (Jagosh et al. 2012; Wallerstein et al. 2008; Israel et al. 2003; Rossi, Freeman, and Lipsey 1999; Sandoval et al. 2011; Schulz, Israel, and Lantz 2003; Weiss, Anderson, and Lasker 2002).
As an approach to research, CBPR has much to offer the field of social epidemiology. It is also the case, however, that there are a number of challenges that researchers and community members alike may encounter in undertaking a CBPR approach. As more public health researchers and practitioners are engaging in this type of work and sharing their experiences, there is a growing literature on how to avoid common pitfalls and challenges. We summarize major themes from this literature below and suggest that researchers considering or newly embarking upon a CBPR project engage in dialogue with their partners regarding how they might attempt to avoid or overcome them. Ideally these discussions should occur at the proposal-writing stage.
A common pitfall that can lead to tensions or misunderstandings among partners (and with potential funders and proposal reviewers) is conflating or mistaking an advisory process for a participatory process. While there is no gold standard for what constitutes “participation” in CBPR, and most consider there to be a continuum regarding levels of community participation (Cornwall and Jewkes 1995), identifying community members to serve on a committee or board that meets several times a year to react to research plans and provide feedback/advice is not CBPR, as described here. Obtaining advice in this manner is not collaboration and does not reflect working in partnership with a community. The essential ingredient of participatory research involves the sharing of power and control over decisions and resources in all phases of the research process, as appropriate (Israel et al. 2008; Cornwall and Jewkes 1995; Wallerstein et al. 2008).
Furthermore, although gathering data from community members in a way that gives them voice in defining problems and potential solutions is important, it does not constitute CBPR in and of itself. Conducting town hall meetings, focus groups, or individual interviews with community members to gather data on perceptions of problems and priorities are important and viable components of a collaborative research process. However, gathering information in such ways does not alone provide opportunities for active, ongoing engagement and influence in decisions related to the research. In the same vein, offering what might be an exciting new program or service to a community as part of an intervention research project also is not CBPR. Again, simply because one is working in a community and interacting with community members in various ways does not mean he/she is engaged in participatory or collaborative research.
For those who are committed to a participatory process in which community members have equal power and voice in all phases of the research, there are obviously a number of challenges to this work. Resource issues are an omnipresent challenge in CBPR and time is a very important resource. Making a commitment to a CBPR approach is also making a commitment to a very time-consuming process for all involved (Israel et al. 1998; Cargo and Mercer 2008). For researchers, engaging in a participatory process often means that the project will have an extended timeline and that a great deal of time will be devoted to meetings with community partners so that key decisions can be made in a participatory rather than unilateral fashion. If the researchers do not live or work in the community involved, the time required for travel to and from the community also can become significant. For community partners, research is yet another commitment and demand on time above and beyond their other obligations. For those participants who are representing a community-based organization or agency in a partnership, working on a CBPR project often means that they have added research responsibilities to a job that is already quite demanding. In addition, research institutions (including academia) and funders expect the research—and the resulting reports and publications—to proceed in a timely fashion. Community organizations expect their employees to be involved with the CBPR project, but also to accomplish all their other work as well (Lantz et al. 2001; Israel, Coombe, and McGranaghan 2010). As such, institutional expectations related to time can also be quite challenging.
Money is also an important resource, and the distribution of it among the individuals and organizations involved in a CBPR endeavor is often a challenge. It is all too often the case that the time and effort of the researchers involved with a CBPR project are supported by the project budget, while the time and effort of community partners (whose primary goal is rarely research) are being donated or supported in a purely symbolic way. There are understandable reasons why the researchers and their institutions often receive more of the monetary resources than community partners and representatives, including how academic research is funded and valued. Furthermore, the traditional ways in which faculty, research staff, and graduate students are evaluated actually provide disincentives to engage in CBPR, which requires that researchers give up some control and add the need for more time and resources to the process. Nonetheless, resources need to be distributed in a way that supports the work and efforts of all partners and that participants believe is equitable.
Another challenge in conducting CBPR is defining the community and determining who represents the community (Israel et al. 1998, 2008, 2013; Minkler 2004) In working with a given community there are a number of issues that need to be considered, such as who represents the community, who decides who community partners will be, to what extent are community partners involved as individuals or as representatives of community-based organizations, how “grassroots” are community members, and to what extent do community partners reflect and represent the community more broadly (Israel et al. 1998, 2008; Israel, Coombe, and McGranaghan 2010).
One of the major strengths and benefits of using a CBPR approach is also one of the biggest challenges—working with the diversity of partners involved. This diversity includes cultural backgrounds with respect to ethnicity or race, social class, gender, sexual orientation, community or academic role, and academic discipline, as well as differences in perspectives, priorities, values, beliefs, assumptions, and language (Israel et al. 1998, 2008; Minkler 2004). Given these multiple backgrounds and perspectives, participants may have different agendas, goals, expectations, experiences with and level of commitment to CBPR, conflicting loyalties, limited trust, lack a common language, lack of multicultural understanding and humility (Chavez et al. 2008; Ross 2010; Tervalon and Murray-Garcia 1998), and little recognition of the need to create a culturally safe environment for all participants (Crampton et al. 2003; Ramsden, 1997). While these differences can lead to conflicts that need to be addressed, they provide a wide array of viewpoints, skills, and experiences that can be drawn upon to foster the successful integration and synergy of ideas and actions within the context of a CBPR project. Researchers must attend to the historical and ever-present role that privilege and racism play in trying to establish and maintain richly diverse CBPR partnerships (Chavez et al. 2008; Minkler 2004; Cargo and Mercer 2008).
A final challenge is creating a balance between research and change goals that is mutually acceptable to all the partners involved (Israel et al. 1998; Minkler 2004; Jagosh et al. 2012; Minkler and Wallerstein 2008). As described earlier, CBPR efforts can address basic research questions, intervention research questions, or both types of questions. Challenges arise when there is a difference among partners in the emphasis and value placed on some types of research and data as compared to others. For example, some researchers may prefer that more data be collected than some community partners, and researchers and community partners may differ in their interest in examining basic research questions versus the development and evaluation of interventions. This is not a situation of deciding whether to conduct research versus action: rather it is a matter of creating a balance and staying committed to the overarching goal that the research will benefit the community involved. For example, in the Healthy Environments Partnership, the partners agreed that the initial focus would be on the investigation of a basic research question: the contributions of social and physical environments to cardiovascular disease risk among Detroit residents. While the focus of this effort was on basic etiological research, it was undertaken within the context of long-term relationships and mutual commitment to ensuring that the research findings would be disseminated and translated into subsequent interventions and policy change (Schulz et al. 2011).
Although engaging in CBPR is hard work with some serious challenges, a number of facilitating factors have been identified, as reported in the growing journal and book literature on participatory/collaborative research (see Israel et al. 1998 and 2008 and Minkler and Wallerstein 2008). There are also published evaluations of participatory coalitions and partnerships, where the focus is on the process by which a partnership was convened and how it engaged in its work (Schulz, Israel, and Lantz 2003; Lantz et al. 2001; Freudenberg 2001; Eisinger and Senturia, 2001; Parker et al. 2003) From this burgeoning literature, we discuss some of the identified facilitating factors for CBPR below.
A critically important facilitating factor for CBPR is trust (Israel et al. 1998). Community members often do not trust the motives or intentions of researchers. There is a legacy of mistrust of research in many communities of color in the United States, fueled by the historical reality of the Tuskegee Syphilis Study and many other research projects that have raised serious ethical concerns (Freimuth et al. 2001; Gamble 1997; Schulz, Caldwell, and Foster 2003). This mistrust is also fueled by the fact that social research regarding community issues and problems is rarely fed back to the community or used as a springboard for community change. The result is that many community members believe that research “uses” the community to benefit researchers and their institutions, but that it does nothing for the community itself and that it can actually cause harm (Israel et al. 1998). Thus, an important facilitating factor for CBPR is establishing and maintaining trust among community partners and researchers by ensuring that the research will be beneficial to the community and that this is not “research as usual.” Community partners have to believe that the research is indeed going to address concerns that are salient to the community and that it is going to benefit the community in some tangible and important way. Building trust with communities takes time and is dependent upon both the words and the actions of the researchers (Lantz et al. 2001). Many of the other facilitating factors described below are important to the CBPR process precisely because they help to promote and facilitate relationships that are based on trust, mutual respect, and a shared commitment to positive social change.
This includes a facilitating factor that is well recognized in the literature: the need to pay significant attention to the process by which the group or partnership is engaging in CBPR (Lantz et al. 2001; Israel et al. 2001; Schulz, Caldwell, and Foster 2003; Becker et al. 2013). It is important that process not be taken for granted, as it is fundamental to CBPR that all participants are comfortable and satisfied with the process by which the group is making decisions and engaging in its work. Processes for how decisions will be made and how work will be accomplished need to be decided upon and implemented, with an infrastructure put in place to support them. It is recommended that partnerships develop and follow mutually agreed upon CBPR principles, operating norms, dissemination guidelines, etc., all of which pay attention to process issues (see Becker et al. 2013; Israel et al. 1998, 2001; Metzler et al. 2003; Yonas et al. 2013). These processes and procedures do not have to be as formal as bylaws or rules. What is important is that they are the result of open discussion and consensus building among the partners, that they are documented, and that there is a commitment to revisit them periodically to ensure that they are being followed and/or to discuss whether or not they need to be revised.
A third facilitating factor is being committed to equitable resource distribution. A true participatory approach fairly compensates community partners and organizations for their time, contributions, and expenses. Equitable distribution does not mean equal distribution; it is up to a particular partnership to decide what constitutes a fair or equitable distribution of resources. Many types of resources (especially money) are distributed through a budgetary process. In a CBPR effort, community partners should participate in budget planning and/or approval. In addition, proposal reviewers and funders should look carefully at the budgets, especially when reviewing a project that purports to be CBPR. A budget in which every minute of time, every mile driven, every telephone call made, and every office supply used by an academic or research partner is covered, but only trivial and largely symbolic amounts of money are going to academic partners, raises serious red flags. In addition to money, there are a number of other resources that can be distributed among the partners involved to ensure equity, for example, training, technical assistance, the ownership of data, and opportunities for participation in national conferences and publications. While any one CBPR project may not be able to achieve complete equity, over time and multiple projects, it is critical that all partners perceive that resources are distributed equitably.
A number of additional facilitating factors have been identified in the CBPR literature, including those reviewed in detail by Israel and colleagues (1998): (1) building upon a prior history of work or collaboration with a community and positive relationships that already exist; (2) identifying key community experts and representatives with whom to partner; (3) identifying and articulating common goals and objectives for the work of the collaboration; (4) having democratic leadership and decision-making processes; and (5) creating infrastructure and having the involvement of support staff, which frequently are the “glue” that holds a partnership together. In a recent review of the literature, Viswanathan and colleagues (2004) discussed several strategies that have been used to “remove barriers to community participation in research,” including the use of educational experiences such as workshops or community forums in which both community members and researchers participate to share understanding and expertise, the creation of a written plan detailing the types of expertise required from all partners at each phase of the project (including the publication, dissemination, and action phases), and the hiring of local people for project coordination and other staff positions. It is beyond the scope of this chapter to review all of the facilitating factors and strategies in detail. Rather, we emphasize that there is a large published literature to which social epidemiologists can turn for guidance and constructive advice for all phases of the CBPR process.
We view CBPR as a viable and important approach to research for those social epidemiologists who aim to foster positive health change and to reduce health disparities, especially in communities or populations that are marginalized by social class, race, ethnicity, geography, or other social factors. A CBPR approach—which focuses on the production of research that is of interest and use to a community and that emphasizes community participation and ownership in all phases—can facilitate and enhance the critical translation of research into interventions and other types of policy action (Themba and Minkler 2003; Israel, et al. 2010a; Tsui, Cho, and Freudenberg 2013). In this section, we address two critical issues that are sometimes raised regarding CBPR: (a) whether or not using a CBPR approach compromises the integrity of the research process and (b) whether or not CBPR “works.”
A number of interrelated concerns regarding CBPR and scientific integrity have been raised. The involvement of community members in CBPR as a key and dominant stakeholder is viewed by some as a threat to the objectivity of the research endeavor (Cornwall and Jewkes 1995; Minkler and Wallerstein 2008). A related concern is that CBPR approaches may “water down” or compromise the research process in an effort to make research more accessible, resulting in research that it is not as rigorous or sophisticated as it could be. This includes concerns about the ability to detect intervention effectiveness, especially if the research design does not include a control group (Krieger, Allen, and Takaro 2013; Jordan 2003). Another concern is that a participatory research process—which blurs the lines between the research process and research “subjects”—produces results that are specific to the process used and thus are not generalizable beyond the community involved.
It is clearly the case that decisions made within the context of CBPR require respectful, honest, and careful discussion of the implications of various research designs, framing of research questions, and implementation of the research for the integrity of the results. Such conversations require the development of trust, the demonstration of trustworthiness, and the time, energy, and commitment to engage different opinions and perspectives; it is also important that partners do not shortchange this process. We also need to recognize that there are multiple perspectives on “what is science” and on what constitutes valid research designs and methodologies in social science research (Sullivan et al. 2003; Green and Mercer 2001). Questions raised about the scientific integrity of CBPR afford an opportunity for dialogue, in which the successful conclusion of some of these conversations may be an “agreement to disagree.” It is also important, however, to probe the assumptions that may underlie some of the concerns voiced above. The assumption that research conducted by academically trained researchers will be more “objective” or less problematic than research incorporating the insights and knowledge of community residents is one that bears consideration. Indeed, there are many examples of academic research that was erroneously motivated by stereotypes or other types of misinformation about groups or communities. Thus, questions raised about the scientific integrity of CBPR afford an opportunity for dialogue about research writ large, and the criteria and conditions under which valid and generalizable knowledge is produced (Jordan 2003; Cargo and Mercer 2008).
As an approach to conducting research, CBPR has the potential to be as good or as bad as the research design, data collection methods, analysis, and interpretation of results allow. We do recognize that inviting and listening to community voices regarding priorities and preferences and that sharing power and control in the research process can significantly influence the choices made at every phase. Such concerns should not be taken lightly. Nonetheless, as noted above, the concerns raised about CBPR are relevant to all research, whether participatory or not. For instance, program evaluators readily acknowledge that stakeholder politics can influence the evaluation questions, the study design, and interpretation/dissemination of results regardless of whether or not a participatory approach is being used (Quinn Patton 1997). It is also the case that CBPR in the realm of public health has employed the full range of research designs (e.g., cross-sectional, longitudinal, experimental) and data collections methods (qualitative and quantitative) available to researchers (Israel et al. 2013). In the area of CBPR intervention research, the designs used have ranged from primarily qualitative analysis without a control group to randomized controlled trials (Viswanathan et al. 2004). It is true that researchers often have to make choices that compromise the ideal research design or data collection approach. Again, this is a challenge that is not unique to CBPR, but a common part of dealing with resource constraints, political situations, and stakeholder realities when conducting research in human populations. This is not to argue that some research approaches are “better” than others. Rather, we are recognizing that there are multiple perspectives on judging scientific quality (Israel et al. 1998; Reason and Bradbury 2001) and that all research strategies have strengths and limitations that need to be considered.
This, however, leads us to a second concern raised by some as an important rhetorical question: Does CBPR work? In other words, what is the evidence that a participatory approach to public health research is effective and worthwhile? Since CBPR is an approach to research rather than an intervention in and of itself, this is a challenging question to attempt to answer. A better question might be does CBPR produce research results that are more likely to meet the long-term goals of creating interventions that address important community issues, identifying the mechanisms by which health disparities are created and perpetuated, and enhancing community capacity to identify and address salient issues on a long-term basis? While this is also a difficult question to answer, a growing empirical literature suggests that this is indeed the case.
In an evidence-based review of the CBPR literature related to health sponsored by the Agency for Healthcare Research and Quality (Viswanathan et al. 2004), the review team found evidence of enhanced research quality in 11 of the 12 completed intervention studies reviewed. This included documented evidence of enhanced participant recruitment in 8 studies, improved research methods in 4 studies, improved variable measurement in 3 studies, and improved intervention outcomes in 2 studies. This literature review also concluded that “very little evidence of diminished research quality resulting from CBPR was reported” (Viswanathan et al. 2004, p. 41). An additional conclusion was that 47 of the 60 CBPR studies analyzed for the review reported evidence of enhanced community capacity as an outcome of the CBPR project, with 9 studies also documenting increased capacity among researchers. These findings suggest that there is indeed “value added” from using a participatory approach in health-related research.
Andrews et al. (2012), in a systematic review of 11 participatory smoking cessation studies, concluded that well-designed CBPR approaches to cessation interventions show promise, especially in marginalized, hard-to-reach communities. In addition, more recently Jagosh et al. (2012) conducted a systematic review of 23 health-related participatory research partnerships, described in 276 publications, to conduct a theory-driven investigation of the potential benefits of these partnerships. This review uncovered seven ways in which a participatory research partnership and process led to improved outcomes, including that a CBPR approach: (1) improved the cultural and logistical relevance of the research; (2) enhanced recruitment; (3) improved professional capacity/competence in stakeholder groups; (4) generated conflicts that are productively resolved and strengthen the partnership; (5) increased the quality of work and outcomes over time; (6) increased sustainability of efforts past initial funding; and (7) created system changes and new projects/activities (Jagosh et al. 2012). Although the review also uncovered some “negative outcomes,” this research synthesis concluded that participatory research partnerships and their activities can improve public health through multiple mechanisms. Thus, the accumulating evidence regarding CBPR underscores our fundamental point that it is an approach that is well worth implementing in a number of public health research contexts.
Community-based participatory research—as a collaborative approach to research that has as its ultimate goals the improvement of community health and the enhanced capacity of community members to define and address their own health needs—is something with which all social epidemiologists should be familiar. To be clear, we are not arguing that one either “believes” in CBPR and follows its principles in all research endeavors or one does not. A social epidemiologist could decide to use a CBPR approach in some research projects, but that it is not necessary, desired, or feasible in other work. As described above, there are inherent challenges in doing CBPR, many of which present significant barriers to committing to this approach to research. Nonetheless, there are myriad benefits to and strengths in using a CBPR approach in research that has as its goals the improvement of community health and an increased ability to use research as a mechanism for positive social change. Thus, it is incumbent upon social epidemiologists working to further understand the social determinants of community health, the causes of social inequalities in health over the life course, and effective ways to reduce disparities and improve health in disadvantaged, marginalized populations to use research processes that involve and incorporate the knowledge, experience, and strengths of the communities most affected. As Zachary Rowe, a community activist and member of the Detroit Community-Academic Urban Research Center, has stated (Schulz, Caldwell, and Foster 2003, p. 293):
“It's not enough to come into a community and do research. The community is not about research—that's a university or academic perspective. The community is about solving problems or challenges that it's facing…. The research can aid in that process. So, as much as possible, we have to push beyond the research.”
The authors wish to acknowledge the contributions of the members of the Detroit Community–Academic Urban Research Center (Detroit URC), which was established in 1995 as part of the Urban Research Initiative of the CDC. The Detroit URC is a collaboration between the University of Michigan Schools of Public Health, Nursing, and Social Work, the Detroit Department of Health and Wellness Promotion, the Henry Ford Health System, and eight community-based organizations: Communities in Schools, Community Health and Social Services, Inc., Detroit Hispanic Development Corporation, Detroiters Working for Environmental Justice, Friends of Parkside, Latino Family Services, Neighborhood Service Organization, and the Warren/Conner Development Coalition.