A diverse group met November 27-28, 2001, in a conference to improve the health of disadvantaged populations through community-based participatory research (CBPR), which is a collaborative process of research involving researchers and community representatives. Participants developed strategies to support and promote CBPR; they also addressed barriers to CBPR.
Acknowledgments
Background
Purpose of Meeting
Welcome and Overview
Keynote Address: The Value of Community-Based Participatory Research
Community Incentives and Capacity Building for CBPR: Successfully Promoting Community Interests through Research
Panel Discussion: Community Incentives and Capacity Building for CBPR
Academic Incentives and Capacity Building for CBPR
Panel Discussion: Academic Incentives and Capacity Building for CBPR
Funding and Funding Priorities for CBPR
Panel Discussion: Funding and Funding Priorities for CBPR
Breakout Group Reports
Conclusion
Appendix A. Summary of Comments Submitted by Participants
Appendix B. Summary of Greatest Hopes and Fears
Appendix C. Final Participant List
There is increased interest in research that aims to improve the health of disadvantaged (minority, low-income, rural, central city, and other) populations. However, conventional research in these communities has a contentious history and offers limited opportunities to improve the health and well being of these communities.
Three additional factors compel us to look toward participatory research to improve the health of disadvantaged communities. First, local community knowledge increases our understanding of the complex interactions among economic, social, and behavioral factors that contribute to disparities and, therefore, should inform the design of interventions aimed at reducing these disparities. In addition, there is a gap between the knowledge produced in research and practiced in these communities. Finally, members of these communities are increasingly reluctant to participate in research and are organizing to monitor and/or prevent such activities.
Community-based participatory research (CBPR) is a collaborative process of research involving researchers and community representatives; it engages community members, employs local knowledge in the understanding of health problems and the design of interventions, and invests community members in the processes and products of research. In addition, community members are invested in the dissemination and use of research findings and ultimately in the reduction of health disparities.
Participatory research in disadvantaged communities has a long and successful history in the social sciences and international and rural development. There is a growing recognition of the importance and promise of this type of research within health services and public health institutions and funding organizations. However, in spite of the increased interest expressed by communities, universities, and funders, CBPR is underutilized. Practitioners of CBPR have identified several barriers to CBPR. These barriers include:
The Agency for Healthcare Research and Quality (AHRQ), in collaboration with the W.K. Kellogg Foundation, the Office of Minority Health in the United States Department of Health and Human Services (HHS), and the Office of Behavioral and Social Sciences Research at the National Institutes of Health (NIH), convened a diverse group of participants for the Conference on Community-Based Participatory Research. Academic researchers, community representatives, private and government funding agencies, and others met on November 27-28, 2001, in Rockville, MD.
The purpose of the meeting was to promote and support the use of CBPR, to explore the use of CBPR as a resource for policymakers to help guide their program development, and to develop strategies to advance CBPR. The two-day meeting brought together representatives from the private and public funding community, CBPR practitioners, community organizations, AHRQ grantees, and other stakeholders to develop strategies that support CBPR within the community, academy, and funding organizations and encourage the use of community knowledge in program development and administration. Participants addressed barriers in the three key areas identified.
Ms. Robin Tucker has spent 14 years working in health care and has focused recently on culturally competent care and health disparities. As the facilitator for the meeting, she saw her role as bringing people with different backgrounds and perspectives together to find common ground and work toward a common goal. She remarked that she would listen, guide discussion, and provoke thoughtful dialog. Her goal was for all participants to leave with a valuable experience.
Ms. Tucker introduced Dr. Carolyn Clancy, Director of the Center of Outcomes and Effectiveness Research at AHRQ. Dr. Clancy was impressed with the incredible response to the meeting. The meeting would help AHRQ further focus its work with priority populations. She provided a context for the meeting by describing the health-related research continuum, which extends from biomedical research (basic science and controlled clinical trials) to health services research. AHRQ focuses on health services research including cost and effectiveness trials, quality and outcomes research, syntheses and meta-analysis, and organization, financing, and delivery research.
Congress established the Agency in 1989 in response to the need for research that would improve the health of populations. AHRQ's three goals are to support research to improve health outcomes, strengthen quality, and improve cost, use and access to health care. The Agency's target audiences include clinical decision-makers, health system decision-makers, and public policy decision-makers. AHRQ works in partnership with communities so it can reach its key audiences.
One can think of the research that AHRQ supports as a "pipeline of investment" in the following three connected components:
AHRQ emphasizes translating research into practice because this component facilitates the development of effective tools for clinicians to use in practice. This component also involves discovering what is needed to sustain changes in practice. AHRQ's research investment results in improved health care outcomes, better quality, greater access, and appropriate cost and use.
AHRQ's 1999 reauthorization reaffirmed the Agency's core research mission to improve quality, outcomes, costs, and utilization of health care. The reauthorization also focused on improving patient safety and charged the Agency with producing annual reports on trends in health care quality and disparities in health care. She emphasized that the latter report concentrates on disparities in health care rather than disparities in health, although the extent to which disparities in health are caused by disparities in care is a critical question.
It is clear that nonclinical factors such as patient income and practitioner characteristics affect health outcomes. For example, receipt of a vaccine for preventable pneumonia among those over age 65 years is profoundly higher in those with higher incomes. Sources of disparities include health insurance access and affordability, available providers and services, primary care accessibility, available specialists and referral services, and quality of care received. AHRQ's reauthorization indicated clearly the following priority populations: rural, inner-city, low-income, racial and ethnic minority populations, women, children, individuals with special health care needs, and elderly individuals. Although these groups often overlap, AHRQ faces a huge challenge in addressing health care disparities.
Dr. Clancy reviewed current AHRQ initiatives to address health care disparities. The Agency established training programs to build capacity for research on priority populations to address leading issues in minority health. Training programs are located in research centers that focus on improving outcomes of care for minority populations and training minority researchers. AHRQ established the Minority Research Infrastructure Support Program (M-RISP) to increase the number of minority health services researchers and to build capacity for institutions to conduct health services research intended to improve health for Hispanics and African Americans. AHRQ grantees may apply for Minority Supplements to extend their research to these populations.
AHRQ has ongoing activities at historically black colleges and universities (HBCUs), Hispanic institutions, and American Indian internship programs for students from Tribal colleges. The Agency increased its investments in these activities in 2000. AHRQ established Excellence Centers to Eliminate Ethnic/Racial Disparities (EXCEED) sites to advance the state-of-knowledge beyond mere documentation of disparities. EXCEED researchers hope to improve understanding of underlying etiologies and identify strategies to reduce inequities. They are working to develop capacity and infrastructure for minority health services research. EXCEED focuses on causes that are amenable to improvements in health services, including access, financing, bias, organizational factors, preferences, interactions with the medical system, and health literacy. Researchers in the program are working to develop sustainable relationships between investigators and communities.
Dr. Clancy stressed the important role communities have to play in health services research focusing on minority individuals. Communities might partner in conducting and disseminating research to improve care and identify research priorities on an ongoing basis. A key challenge involves linking communities with researchers in a true partnership rather than "colonization." Communities and researchers must also identify critical success factors for partnership. She thanked conference organizers and remarked that the meeting was a great opportunity to advance partnership among communities, researchers, and funding agencies.
Dr. Dan Stryer welcomed participants and thanked them for traveling under difficult circumstances. He mentioned that the meeting began as a small gathering of EXCEED investigators to promote collaboration. Dr. Henrie Treadwell offered support from the W.K. Kellogg Foundation. Once people heard about the opportunity to gather, meeting participation grew rapidly because of the tremendous interest in this timely topic. Dr. Stryer focused on the need to act on the information learned at the conference. He asked participants to identify specific steps to advance CBPR, reduce barriers, and facilitate this promising research model. CBPR undoubtedly strengthens the impact of health services research.
Dr. Stryer thanked Dr. Kaytura Felix-Aaron for leading the effort and Dr. Robin Weinick for her contributions to planning. He noted that AHRQ staff had tremendous support as they organized the conference. He acknowledged conference departmental collaborators and representatives from these organizations: The W.K. Kellogg Foundation (Dr. Henrie Treadwell); Office of Minority Health (Mr. Guadalupe Pacheco); and Office of Behavioral and Social Sciences Research (Drs. Raynard Kington and Virginia Cain).
Dr. Henrie Treadwell greeted participants on behalf of the W.K. Kellogg Foundation. She thought the conference would facilitate continued partnership for this important work. Although the Kellogg Foundation has limited resources, they hope to bring synergy to CBPR efforts. Dr. Treadwell noted the appropriateness of AHRQ's focus on priority populations. These groups are majority populations in many areas and will soon become majority populations throughout the country. They need services, yet the health care system is ill equipped to serve them appropriately. Research on priority populations is needed to inform policy. Dr. Treadwell was pleased to see a diverse group at the conference, and she challenged each participant to become a "committee of one" to advance the dialog on CBPR and health services research funding.
Participants introduced themselves and described briefly their interest in CBPR.
Dr. Kaytura Felix-Aaron greeted participants and provided an overview of the meeting. CBPR is a collaborative process of research that involves researchers and community representatives in all phases of research. Also known as Participatory Action Research, this research model emphasizes participation of groups under study. She stressed the importance of distinguishing participation from involvement. Participation connotes true partnership and a decision-making role for the community, which is an essential principle for CBPR.
CBPR is not new, but DHHS and private foundations demonstrate increasing interest in this model. AHRQ staff assessed the "CBPR landscape"—i.e., the current environment for CBPR. They observed high interest and commitment to CBPR in some areas or "islands of CBPR." Despite growing interest in CBPR, there is skepticism about its value and a lack of information about this research model. Those familiar with CBPR have identified many challenges to its advancement. In response to the current context, AHRQ decided to convene a diverse group of stakeholders to identify needs and strategies to advance CBPR.
Dr. Felix-Aaron reviewed the meeting objectives, agenda, and products. She stressed that organizers allocated more than half of the conference time for open discussion and that participants would develop an action plan on the second day. Dr. Felix-Aaron remarked that the conference summary, commissioned papers, and original research findings would be published in a special issue of the Journal of General Internal Medicine next year. A conference summary written for community-based organizations would also be available in a community-oriented publication. She requested that participants volunteer to serve as reviewers on the publications. Dr. Felix-Aaron noted that the indicators of conference success would be the development of an action plan that advances CBPR and the identification of three actions that participants would take after leaving the meeting.
Ms. Tucker also focused on the need for action as a conference product. She mentioned that meeting organizers made several tools available for this purpose. She requested that participants use the four index cards at their stations to raise questions and suggest action steps. The cards were color-coded to identify questions related to community, academic, and funding issues. Participants also received cards to suggest action steps to advance CPBR. The index cards would be collected, synthesized, and redistributed to encourage discussion and solutions. Ms. Tucker referred participants to the two color-coded Post-it® notes in their materials packet. They should write their greatest hope and biggest fear on separate notes and post these on the designated wall. Participant questions, hopes, and fears are listed in Appendixes A and B.
The overall goal of the conference was to open dialog, so these tools and the open discussion time provided many opportunities. She encouraged participants to be honest and to provide the "gift of feedback" to let others know of offensive comments. Ms. Tucker emphasized that participants should be authentic and share their experiences, but she acknowledged the challenges of doing so in such a diverse group.
On the first day of the conference, the keynote speaker addressed the value of CBPR and subsequent speakers presented papers on community incentives and capacity building for CBPR, academic incentives and capacity-building for CBPR, and funding and funding priorities. Reactor panels composed of representatives of funding organizations, researchers, community representatives and advocacy groups, and professional organization journal representatives responded to the papers presented. All participants engaged in a facilitated and open discussion on the papers.
Barbara Israel, Dr.P.H., M.P.H., University of Michigan
Dr. Barbara Israel remarked that the conference was a very exciting event and acknowledged her research partners in the Detroit community. She explained that an increasing amount of evidence indicates a disproportionate burden of morbidity and mortality within communities of few economic and social resources and communities of color. Inequities in health status are associated with social, structural, and physical environmental factors such as poverty and economic divestment.
The current disparities in health status have implications for research and practice. Addressing these disparities in health status is a major challenge for researchers, practitioners, and the affected communities. Historically, within such communities, research has rarely directly benefited and sometimes actually harmed the communities involved. Research has tended to exclude these communities from influence over the research process.
The exclusion of communities from the research process has implications for research and practice. Interventions have often not been as effective as they could be because communities were not involved. Because communities were not included in all aspects of intervention design, implementation, and evaluation, interventions have not been tailored to participant concerns and cultures.
There have been increasing calls for more participatory and comprehensive approaches to research and practice in order to reduce disparities in health. She acknowledged that CBPR is not the only viable research model, but noted that it is one effective approach to advancing more equitable health services research.
Dr. Israel defined CBPR as follows:
Participants follow key principles when conducting CBPR. Dr. Israel emphasized that those involved should not impose principles on a partnership, but need to discover and establish principles as a partnership. Dr. Israel shared the CBPR principles that she and her colleagues have developed working together in Detroit.
CBPR involves a long-term process and commitment. Dr. Israel emphasized that it is critical for researchers to continue working with the community when they are no longer funded to do so.
Dr. Israel acknowledged the Detroit Community-Academic Urban Research Center (URC) partner organizations that include community-based organizations, an academic institution, the local health department, and an integrated care system. The Centers for Disease Control and Prevention (CDC) funded the Detroit URC in 1995 through a cooperative agreement.
The overall mission of the Detroit URC is to establish an effective community-based participatory research partnership to jointly identify factors affecting the health and well-being of residents on the east and southwest sides of Detroit. The Detroit URC strives to implement and evaluate interventions and policies to address these factors in ways that recognize, build upon and enhance the resources and strengths of the communities involved.
The Detroit URC is currently conducting 11 funded CBPR projects addressing a wide scope of issues. For example, projects address:
Each project has a steering committee with representatives from URC partner organizations and additional organizations depending on the needs of the project. The Detroit URC has received over $23.5 million in Federal and foundation funding, involved 20 University of Michigan faculty and over 50 graduate and post-doctoral students, hired over 70 community members, and has built new relationships between researchers and community members, and between the African American and Latino communities within Detroit.
Dr. Israel described the benefits of using a CBPR approach and the contributions of this approach to communities and science. CBPR enhances the relevance and use of data, increases the quality and validity of research, improves intervention design and implementation by facilitating participant recruitment and retention, and benefits the community through the knowledge gained and actions taken. CBPR also provides resources for the communities involved, joins partners with diverse expertise to address complex public health problems, increases trust and bridges cultural gaps between partners, and has the potential to translate research findings to guide the development of further interventions and policy change.
In conclusion, Dr. Israel remarked that there is a need for greater awareness and recognition of the meaning and value of community-based participatory research. Communities that experience a disproportionate burden of health disparities need funding support from public and private institutions to advance CBPR. Funders should emphasize capacity building and training of all partners to enhance the skills needed to conduct CBPR. Institutions should increase the benefits and reward structures for involvement in CBPR. Finally, multiple case study evaluations are needed to assess the context, process, and outcomes of CBPR efforts.
Participants discussed their experiences in conducting CBPR work. They focused on achieving mutual respect among the different players in CBPR as a necessary condition for advancing this approach.
Question: How faculty involved in CBPR might gain respect from the academic community:
Dr. Israel remarked that supportive deans assist faculty members who conduct CBPR. Obtaining funding for CBPR work provides legitimacy and infrastructure. It is absolutely necessary to publish, so one might conduct research in other areas with a quicker publication turnaround while also conducting CBPR.
Question: Interacting with Institutional Review Boards (IRBs):
Dr. Israel commented that her team worked very closely with their IRB and communicated changes in the research protocol in an ongoing fashion. They provided the rationale for and obtained approval from the IRB to use a verbal consent procedure for group and individual interviews, as appropriate.
Question: Involving community outreach workers and community members as interviewers:
Some researchers may be threatened by the involvement of community outreach workers in CBPR. Dr. Israel suggested involving these workers in interventions, which does not tend to threaten researchers. When involving community members with interviews, one will need to convince researchers that community members can collect high quality data. She recommended showing researchers mock interviews and demonstrating an extensive training process for community members. Her team spends 10 to 40 hours training interviewers and provides extensive practice with feedback. They partner students with community members, which results in improved data quality and benefit to students. She used some standard procedures that enhance data quality, for example, field office staff review interview responses immediately after collection to obtain missing data and provide feedback to the interviewers. Staff call participants at random to check on interview quality. She noted that her team has dismissed interviewers when followup showed they were not doing good jobs. Once researchers are convinced that community members are well trained and that quality checks are in place, their hesitation to include them as interviewers usually diminishes.
Question: Protecting client confidentiality when community members are involved in data collection:
When those living in the community interview their fellow community members, confidentiality and data quality might be jeopardized. One way to address this concern is to check interviewer-participant assignments and substitute interviewers as necessary to ensure that no one interviews someone they know. All CBPR interviewers should sign an agreement to protect participant confidentiality.