Moving from Rhetoric to Evidence-based Action in Health Care

Do you know how many meetings I've attended in the last year on CBPR? And do you know what has resulted from those meetings? Nothing.

This was the sentiment of a researcher when he was initially contacted about taking part in a meeting on Community-based Participatory Research (CBPR). This statement succinctly captures the frustrations of many who have been involved with CBPR. Yet, they also raise questions as to the place CBPR should take among more traditional research approaches and what can be done about that. This issue of the Journal of General Internal Medicine examines these questions, presents a number of examples of CBPR, and identifies strategies that may help the field move from rhetoric to having a more defined and central role in health services research. This special issue is the outgrowth of that meeting of stakeholders—community leaders, researchers, funding organizations, and journal editors—convened in November 2001 by the Agency for Healthcare Research and Quality (AHRQ) in conjunction with the W. K. Kellogg Foundation, the Office of Behavioral and Social Sciences Research at the National Institutes of Health, and the Office of Minority Health in the Department of Health and Human Services.¹

Participatory approaches to research are well established in environmental and public health and other non–health-related fields. Their role in understanding and improving health care, however, has been quite limited. CBPR practitioners note that calls to expand opportunities for CBPR result in little change, a consequence of challenges faced by funding organizations, academic researchers, and community organizations. While there is some skepticism about the value and validity of participant/subject involvement in research, there is the growing consensus that strategies that aim to make change should include the active involvement of stakeholders, including communities and patients. Policy makers, researchers and communities are taking active steps to expand opportunities for CBPR. This editorial presents a brief overview of CBPR and its role in improving health and health care, discusses why CBPR has failed to attract more support, and finally outlines action needed to advance CBPR.

WHAT IS CBPR?

Community-based participatory research is an approach to research that emphasizes the equitable involvement of community members, representatives of community organizations, and researchers in all aspects of the research process.² CBPR also has been defined as systematic inquiry that involves collaboration of those who are affected by the issue under study to generate new knowledge, educate, act, and effect social change.³ While experts may differ in how they operationalize CBPR, they agree that in CBPR, community representatives are substantively involved in the research process; this involvement may include identification of research priorities, development of research questions and hypotheses, choice of methods and approaches, actual implementation and conduct of the study, analysis and interpretation of results, and dissemination and implementation of findings. They also agree that CBPR can result in broader uptake of findings and, ultimately, improvements in outcomes for patients and community members.^2,3 Potential advantages of CBPR include: 1) the convergence of partners with different skills, knowledge, and expertise working in concert to solve complex problems; 2) enhanced trust between communities and researchers; 3) increased relevance of the research question and data; 4) increased quantity and quality of data; 5) increased dissemination and use of data; and 6) improved translation of data into policy and practice.² Finally, CBPR can increase the likelihood that high-priority issues are addressed in a manner that recognizes key contextual factors.^2–4

Two elements of CBPR—the enhanced uptake of findings and involvement of community members—have particular significance for quality improvement and health disparities research. In the face of new knowledge, patients, providers, organizations face many barriers to changing their behaviors and improving care. Barriers faced by these agents include lack of awareness of new knowledge, distrust of research and skepticism about its applicability, and mismatch between the priorities of those who produce knowledge and those who use it. Funding organizations, including AHRQ, have made considerable efforts to address barriers faced by these agents and have broadened the involvement of these agents in research. For example, AHRQ has funded a number of initiatives, including Translating Research Into Practice⁵ and Partnerships for Quality,⁶ that explicitly encourage research partnership with provider organizations and health institutions. However, little attention has been given to partnerships with patient groups or community-based organizations (CBOs), even when such research seeks to change patients' behaviors and community practices. Participatory research offers patients, practitioners, and policy makers the opportunity to address their own priorities, examine their own conditions, pilot-test best practices in their own settings, and adapt these practices to meet their specific needs. The knowledge generated from these local adaptations is a key component of the quality improvement feedback loop.

Participatory research with communities of patients and consumers also may provide funding organizations with a coherent approach to working on disadvantaged population health issues, as it may provide insights into aspects of communities that would otherwise be missed by researchers. Congress noted this potential for CBPR in its Minority Health and Health Disparities Research and Education Act of 2000, in which it directed AHRQ to “implement research strategies and mechanisms that will enhance the involvement of … representatives of appropriate tribal or other community-based organizations….”⁷

AN ACTION PLAN FOR EXPANSION OF CBPR

While there has been considerable talk about expanding opportunities for CBPR, efforts have been isolated. If CBPR is to fulfill its potential with respect to enhancing uptake of findings and reducing disparities for marginalized communities, a number of challenges must be overcome. The November 2001 meeting brought together academics, funders, and community leaders. Although community leaders have been historically marginalized in the research and policy process, they participated as meeting presenters, discussion leaders, and general audience in that meeting. In addition, in the spirit of partnership, the meeting summary and recommendations were sent to all participants for feedback. Participants identified the following key issues and recommendations.¹

Community-based participatory research partners report difficulty in obtaining funding because of concerns that CBPR is a nontraditional type of research and uncertainty on the part of donors about when and where it should be applied. Funding organizations and scientific review panels, in general, have little expertise in reviewing participatory research proposals and are generally skeptical about the contributions of lay persons to scientific inquiry.⁸ This skepticism may present significant obstacles to grants receiving favorable ratings and ultimately to funding. In addition, communities are often reticent about participating in research because of a prior history or perception of abuse. Communities describe a long-standing practice of researchers going to communities, collecting data, and not sharing the results or the lessons learned; a practice sometimes referred to as “helicopter research.” Moreover, communities usually derive little financial benefit, with budgets and staffing decisions being controlled by the researchers and academic institutions. The project-specific nature of funding encourages researcher–community relationships that are episodic and focus on single issues and not relationships that are long-standing and broader in scope. Likewise, budgeting arrangements rarely allow for CBOs to develop the infrastructure necessary to participate in research. Finally, most academic systems reward publications, and researchers find little support for community service or time spent establishing community networks. Because of difficulties in getting their work published in prestigious journals, relatively few academic researchers have been able to build careers on CBPR.

The group also identified a number of immediate priorities for CBPR. Although there has been some activity in this area since the meeting, a lot more needs to be done. The group recommended that a report synthesizing the state of evidence related to CBPR be prepared in order to address a number of key questions. One question relates to defining the essential elements of CBPR. Other key questions include: what are “best practices” in CBPR; what constitutes high-quality CBPR; what are the characteristics of successful investigator–community partnerships; which topics are best suited to the strategy; and what are the outputs of participatory efforts. In response to this recommendation, AHRQ has funded the development of an evidence report by the University of North Carolina Evidence-based Practice Center. This document will have multiple audiences. First, funding organizations may use it to determine when and how to invest in CBPR. It also will help define the value-added of a community–researcher partnership and assist funding organizations in sponsoring partnership-building activities. Second, the report could enhance the stature of CBPR by providing tenure and promotion committees in academic institutions with criteria to guide their evaluation and reward of faculty engaged in CBPR. Third, journal editors and review panels for funders could use the report to inform the peer review process. Finally, CBOs could use the report to guide their partnership activities. By evaluating the evidence, this report will present a framework for the continued development of the science.

A second priority identified by meeting participants was to increase funding opportunities. Since the meeting, AHRQ has committed to incorporating language to encourage participatory approaches into all appropriate, new funding initiatives and to working with other federal agencies to foster departmental collaboration around CBPR.⁹ Recently, Dr. Carolyn Clancy, the Acting Director of AHRQ, issued a notice in the Federal Register expressing the Agency's interest in this type of research and encouraging input from its customers and stakeholders on how the Agency can implement CBPR in its research portfolio and in the field of health services more generally.¹⁰ Other recent federal activities include the Community-based Prevention Research, a $11.4 million research grant program funded by the Centers for Disease Control and Prevention in October 2002,¹¹ and the Community-partnered Nursing Intervention Program, which is funded by the National Institute of Nursing Research.¹²

Additional priorities in need of specific action include: 1) developing and disseminating educational programs that train students and faculty in participatory approaches that are respectful of and beneficial to communities; 2) building a national clearinghouse for the sharing and dissemination of information, tools, and resources for CBPR; 3) strengthening the capacity of community-based organizations to function in research by allocating resources for community collaboration; and 4) increasing funding specifically for partnership-building and dissemination activities. These recommendations for policy action developed by this broad group of stakeholders resonates strongly with recommendations by leaders in the field.¹³

FROM RHETORIC TO ACTION

This Special Issue responds to the meeting participants' call for broader dissemination of CBPR, contributes to the evidence base of CBPR, and complements literature presented in other recent journal issues.^3,14–17 It presents both perspective pieces, which review policy-relevant issues, and scientific papers. The spread of CBPR can be described in terms of the Roger's model of diffusion of new innovations. The 5 classes of users are “innovators,”“early adopters,”“early majority,”“late majority,” and “laggards.”¹⁸ Innovators and early adopters tend to be more willing to test new ideas and are less demanding of evidence, especially those ideas that fit into existing beliefs. Those in the latter 3 categories depend to a greater extent on a more complete understanding of the innovation and its effects, and are affected to a greater extent by the challenge of implementing change. Whereas innovators and early adopters are already using and testing CBPR, others are awaiting the hard evidence. This Special Issue presents some of the hard evidence. The evidence report currently under preparation will synthesize this and other evidence to advance the science. This may facilitate the use of a participatory approach by early- and late-majority groups in academic institutions, communities, and funding organizations. The transition of CBPR from an approach that only a few use and appreciate to an accepted approach that is used by many to improve care and reduce disparities will require developing the science, addressing the challenges, and raising the visibility of this approach.