Eric Bass, M.D., M.P.H., Journal of General Internal Medicine and Johns Hopkins School of Medicine
David Korn, M.D., Association of American Medical Colleges
Tony Whitehead, Ph.D., University of Maryland
Dr. Eric Bass, editor of the Journal of General Internal Medicine, shared from his perspective as a general internist in a traditional academic medical center. CBPR and other types of "non-traditional" research approaches face the same barriers—i.e., the perception that the science is "soft" and difficulties in obtaining funding and publication. He focused on specific actions that could facilitate funding and publishing and bring attention to CBPR successes.
To overcome funding barriers, Dr. Bass recommended that the field:
To overcome publication barriers, Dr. Bass recommended that the field:
He emphasized that actions that enhance the ability to obtain funding and publish will help faculty who conduct CBPR gain promotion and tenure. He encouraged participants to expand CBPR networks to share information and facilitate dissemination.
A Perspective from Academic Medical Centers
Dr. David Korn shared the perspective of medical schools and centers. His goal was to make observations that might assist strategy and planning efforts. Participants should keep in mind that academic medical centers represent a diverse set of social institutions, so it is not useful to make generalizations about "medical schools" as if they were all similar. Various medical schools have very different missions, prestige levels, histories, and relationships with communities. Some institutions have a mission to advance local/regional concerns, while others see the world as their community.
There are some common themes, however. All institutions of higher education expect faculty to demonstrate excellence in some combination of teaching and research, and some require service to the community. Dr. Korn emphasized that in the academic setting, evaluation is paramount. The focus of academic evaluation is the individual, so the system has difficulty assessing achievement for individuals involved in interdisciplinary research. This problem has to be solved before CBPR and other types of interdisciplinary research can fully establish themselves in academic institutions. Fortunately, there is increasing recognition that most scientific problems are so complex that they require interdisciplinary research. Unfortunately, a well-established value hierarchy exists in academic institutions. That is, academic institutions place higher value on some types of research and journals. Most research universities rely heavily on external funding as their fluid pool of resources since institutional resources are limited and allocated for specific purposes. Therefore, investigators must persuade institutional leaders to allocate resources to their research program or win external funding from an organization that has integrity and rigorous selection criteria. He thought it would be productive for CBPR to train investigators to conduct rigorous research and champion the work. A focus on patient empowerment as part of CBPR might be of interest to academic medical centers.
A Perspective from Anthropology
As an anthropologist, Dr. Tony Whitehead shared from the cultural framework perspective. When there is tension between two communities, it is necessary to address the unconscious paradigms that individuals carry into situations. All cultures, including academic disciplines, socialize and influence the views and values of their members. Academics are trained to view issues with a high degree of precision and reduce phenomena to a small set of variables. In contrast, communities emphasize context, process, appropriateness, and relevancy. Science is a language and tends to be the language of those in power. Community members can see that researchers have been socialized to see themselves as more important than others so tension results. Community-researcher relations are complicated when the community involved is diverse and complex. In developing such relationships, cultural translation is necessary for the communities to have a better understanding of each other.
Community partners can provide a translation of the culture/community, yet researchers have to be open to the emergent characteristics of cultures and relationships. Overall, understanding the community enhances the meaningfulness of the research and positive relationships with the community facilitates the research process. Often the community struggles with the same questions as researchers. He encouraged those involved with CBPR to develop a "project culture" and establish common objectives and goals from the beginning. Relationship monitoring and process and formative evaluation can help researchers develop a project culture.
Participants discussed academic incentives and capacity building. They focused on academic culture, which values rigorous research methods, analysis and reduction of phenomena to a small set of variables, and the language of science. In contrast, the community perspective values context, process, appropriateness and relevancy. Because of the unbalanced power dynamic and differing cultures and languages, tension results when the two cultures meet. Academics who want to work with the community and understand the culture sometimes feel that they are "caught between two worlds, but part of neither." These investigators, as well as others from nontraditional research approaches, perceive a disadvantage in terms of how their institutions assess their work. Community members focused on the need for academic institutions, which have been traditionally isolated, to reach out to communities and build external relationships. Dr. Korn appreciated the issues identified by participants, but he advocated action rather than discussion of differences and perceptions held by one group about another. He encouraged participants to take specific steps that would advance the necessary changes that they have identified.
Need to Increase the Number of Faculty Members Conducting CBPR
Although CBPR is not the only valid research approach and is not suitable for all researchers, the CBPR approach needs more investigators.
Benchtop science and CBPR can be connected. Researchers should be creative and open minded about this possibility.
Funding Initiatives
Requests for Applications/Proposals should ask for projects that join benchtop science and CBPR, thereby targeting and facilitating collaboration.
Federal funding allocation and research agenda should be accountable to taxpayers.
Since the amount of commercial research and development funding is three times the Federal research budget, investigators using the CBPR approach should apply for private sector funds.
Academic-community Relationship
CBPR projects should include CBOs in their budgets.
Once a relationship with an academic institution is established, the community should leverage university resources (e.g., priority tuition reimbursement for students who are community partners and positions that are half time community and half time academic.
Students could pressure the university administration to improve the CBPR curriculum.
To foster a good academic-community relationship, partners need to discuss and agree upon intellectual property rights from the beginning. Universities have not typically dealt with intellectual property issues in the context of collaboration, but there is a great need for them to do so.
The Value of CBPR
CBPR offers a fresh approach to engaging disadvantaged populations in clinical research.
The methods for developing evidence-based guidelines could be applied to synthesizing evidence on the value of CBPR. Scholars should compile evidence on interventions that are only effective when implemented at the community level.
In communicating the value of CBPR, proponents need to balance the emphasis on process and products.
Angela Glover Blackwell, J.D., PolicyLink
Ms. Angela Glover Blackwell commented that she learned a great deal on the first day of the conference. She has used CBPR in her own work, although she did not use this term. She noted that others had pointed out the funding challenges, so she would try to elaborate on the deeper issues of CBPR funding.
She described her experience with several community-based projects. In one situation, the city of Oakland, CA, supported the Urban Strategies Council to bring various organizations together to prepare an application for empowerment zone funding. The team enacted the principles of CBPR and developed an excellent application. However, the project was not funded. She stressed that the organizations continued to work together for community change. The city demonstrated deep understanding of community needs by trusting community organizations with the application rather than automatically delegating it to an academic institution.
Ms. Blackwell expressed a strong preference for community-building participatory research because it advances solutions that improve quality of life for individuals and communities. She defined community-building participatory research as:
The community-building perspective understands that historical racism has put individuals at an extreme disadvantage. This perspective also understands that racism continues every day because it permeates institutions regardless of leadership.
Funding for community-building participatory research must focus on achieving equitable outcomes and examining the process to reverse power dynamics. Funders must understand the following:
Carolyn Clancy, M.D., Agency for Healthcare Research and Quality
Iris Farabee-Lewis, D.D., Centennial Caroline Street United Methodist Church
Raynard Kington, M.D., Ph.D., Office of Behavioral and Social Sciences Research, National Institutes of Health
Henrie Treadwell, Ph.D., W.K. Kellogg Foundation
Dr. Iris Farabee-Lewis stressed that communities require financial support to develop infrastructure. They need technical assistance to sustain research projects. Funders could support the development of long-term relationships among diverse groups. Dr. Farabee-Lewis emphasized that there must be followup programs/interventions to address community problems identified by research. The community would like to see funding initiatives to train their own people to do research. Finally, communities deserve access to data collected by CBPR projects.
Dr. Raynard Kington commented that he is optimistic about CBPR's future based on recent indications and events. The National Academy of Sciences/Institute of Medicine released several reports relating to this type of research. Because such reports have tremendous influence on the scientific process, there is good reason to expect that funders will respond. These reports identified research questions that can only be addressed through community-based research. The Federal initiative to eliminate health disparities elevated the profile of these research questions. Therefore, research topics that are best addressed by the CBPR are now at the forefront.
There is also increasing acceptance that the interdisciplinary approach is the only effective way to address complex problems. Although it can be difficult to effectively implement interdisciplinary teams, biomedicine provides a successful model. There is also an increasing interest in the social determinants of health, a topic very suitable for CBPR. With increasing interest in social determinants of health and health disparities, investigators need to make explicit to funders how CBPR will solve important health problems. Dr. Kington noted that there are multiple valid definitions of community. He suggested that CBPR investigators adopt the broadest definition possible to engage the maximum number of people.
Dr. Kington spoke of the need to improve the grant review process. CBPR is not well understood by reviewers. Therefore, the field must define excellent CBPR and create specific criteria that reviewers can use in their assessment of grants. To educate funders and scientists about CBPR, members of the community should volunteer to be on institutional review boards or community advisory committees (for a university or NIH Institutes).
Dr. Carolyn Clancy commented on the current high interest in CBPR as a means of enrolling participants in large clinical trials. Although this interest is pragmatic, individuals invested in CBPR could build on this momentum to advance CBPR as a research model. She encouraged participants to define critical CBPR elements for funders. Funders need specific information on the following questions:
Funders have resources that can act as a catalyst, but are challenged to build capacity in communities with multiple needs and few assets. They struggle with the need to balance unique insights into one community and knowledge that can be transferred to other communities. Funders need benchmarks for CBPR success and guidance as to suggestions to researchers when these benchmarks are not achieved. CBPR must demonstrate its value through clear metrics and clarify the types of research questions for which CBPR has the most value. The field must develop methods, especially for interaction assessment.
Dr. Clancy commented that community members might improve the grant review process by suggesting panelists and advising funders about the characteristics of a balanced CBPR portfolio.
Dr. Henrie Treadwell noted the enormous challenges faced by those attempting to eliminate health and other disparities. Given the current policy and resource allocation, health status is declining. Change is clearly needed, and she hoped that the victims of inequities would not be blamed.
She stressed that taxpayer communities should have a voice in determining the Federal research agenda. Communities must discuss and clearly identify a worthwhile research agenda. Effective CBPR includes a policy component and community organization to inform policy and mobilize public funds.
The W.K. Kellogg Foundation supports pre- and post-doctoral training programs to increase the pool of CBPR investigators, especially those from minority and disadvantaged communities.
Participants discussed funding and funding priorities for CBPR. Community members identified specific needs related to developing infrastructure and sustaining research projects. They stressed that it is not enough to identify problems in the community and conduct research studies examining such problems. Communities require followup programs to achieve social gains and improve overall health. Participants expressed a desire to be a part of the solution for identified problems, and they committed to being part of the solution by presenting various proposals to facilitate community advances.
Dealing with Finite Resources
Participants acknowledged limited funding for all research and discussed how to address this problem. Ms. Blackwell suggested that CBPR focus on influencing policy to obtain limited Federal resources. Community members could convince policymakers to address issues of interest to CBPR. Individuals engaged in CBPR should work with the media and political scientists, as this would help mobilize public opinion and reach policymakers. To engage the media and policymakers on an issue, CBPR investigators should provide rich, qualitative data (i.e., stories that put a "human face" on CBPR and show the positive effects of this approach). CBPR should also stress that the approach yields rich data and knowledge that can facilitate quality of life improvement. Policymakers tend to focus on practical outcomes, which CBPR has the potential to provide. It is critical for CBPR to be explicit about how evidence could be translated into policies and to indicate the worthiest research topics.
Dr. Kington suggested that CBPR investigators argue that the approach increases understanding of basic health processes and could be extended to all disadvantaged populations. He thought funders would respond favorably to the broadest possible impact of CBPR.
Community Health Indicators
Most community health indicators are deficit- and disease-oriented. Community members prefer to emphasize their assets and strengths. CBPR should define the attribute of a healthy community.
The Funding Process
The scientific paradigm dominates the grant review process. Reviewers require training on the CBPR approach. Funders should develop truly interdisciplinary review panels.
The CBPR field must find a way to reach funding organizations that have no interest in this research model.
Investigators should identify agencies whose interests are aligned with CBPR and support efforts by these organizations to enhance and better allocate resources.
Sustaining Gains in the Community
Communities must organize to sustain gains in equity.
Conference organizers divided participants into three breakout groups to develop strategies to:
Breakout groups consisted of participants from diverse experiences, but each focused on incentives and capacity building from one perspective. Conference organizers provided a set of ground rules and specific questions for each breakout group. Questions for each group are presented prior to each group's report. Facilitators and notetakers were present in each group to help it formulate a report to the larger body when participants reconvened.
Participants recommended numerous action steps. Conference organizers highlighted the following 13 recommendations in order to focus attention on those that had greatest consensus and presented opportunities for immediate action:
These highlighted recommendations are also listed throughout this summary as they occurred in the discussion.
Participants of the community breakout group spent time explaining and clarifying their perspectives. They discussed systemic discrimination and the need for those engaging in CBPR to have this difficult conversation. From the community perspective, it is critical for researchers to "walk the walk" and establish mechanisms in the research project that integrate community members as equal partners.
Conference organizers focused community breakout group participants on the following questions:
Barriers
The group identified the following barriers to conducting CBPR from the community perspective:
These are difficult and sensitive issues, but they must be discussed among CBPR partnerships from the beginning.
Facilitators
The group identified the following facilitators to conducting CBPR from the community perspective:
Recommendations
The group suggested that CBPR projects incorporate the following:
Action Items
All CBPR partners need to build capacity, not just communities. The group suggested the following activities and resources to build the capacity of all partners:
The group described how researchers and funders might begin and sustain a dialog with communities about their priorities. It is critical to include community members as project staff members and for faculty to reflect the characteristics of the community. These actions help researchers develop trust and a good relationship with the community. Researchers must acknowledge that the project involves multiple communities and that there are differences within communities. Power sharing among partners must be built into the institutions. Academic partners should provide community members with some authority to direct financial resources.
Members of the group did not like the term "community consent" because CBPR does not involve a single community. They generally agreed that a consenting community stays with a project. Perhaps "community participation" is a more appropriate term. Participants stressed the researchers need to obtain community and CBO consent. They should recognize that not all CBOs represent the community, that there are multiple levels of community, and that the extent to which a CBO represents a community can change. Perhaps a model of community consent is provided by a Tribal council resolution to grant access and authority to conduct research with their community. Community advisory boards help define projects and ensure regular community inclusion. Researchers should discuss the definition of consent and the mechanisms that they want to use to obtain consent with the community. Sometimes consultation allows researchers to ignore the community voice, so the community must specify their requirements for consent. To engage a community in a project, investigators should conduct qualitative research to assess the community's view on the conduct of research. Researchers should also engage CBOs to encourage and assess community consent for programs. Finally, the community consent process must be fluid and dynamic. Communities and academicians must share an ongoing dialog to identify what action should occur and whether actions should continue.