Strategies for Academic and Clinician Engagement in Community-Participatory Partnered Research

There have been recent practice and policy concerns over the “quality chasm,” or gap between the promise of evidence-based medicine and the realities of community practice¹ with little variation by geographic and sociodemographic factors.² Studies document disparities in access of care for particular conditions, and there is widespread concern about disparities in health status and health risk factors disadvantaging underserved ethnic minority and lower-socioeconomic status groups.^{3 - 4} Addressing quality gaps and health disparities will require implementation of programs to address social determinants of health and improve services delivery across diverse communities. Doing so for underserved communities may be especially challenging owing to resource constraints, underdevelopment of research, and historical distrust in research and health care in some groups.^{3 ,5}

Experts recommend promoting public participation and engagement of diverse communities in research as a strategy to enhance its relevance and to address disparities more effectively^{4 ,6 - 7} Community-based participatory research (CBPR) is the prevailing paradigm to facilitate these goals by promoting mutual transfer of expertise and power sharing in decision making and data ownership across community and academic partners.^{8 - 10} A recent review identified relatively few English-language CBPR studies in health but wide variation in extent and type of participation.¹⁰ Community-based participatory research has been used more as a paradigm for public health than for clinical or health services research.^{8 - 11} Many features of CBPR—such as spending time in the community, power sharing, and action research methods—might challenge physicians, given their clinical training that often requires interactions under time pressure, the hierarchical structure of academic medicine, and the focus of medical research on controlled trials as the standard for evidence. However, opportunities (such as the recent National Institutes of Health announcement for CBPR research [http://grants.nih.gov/grants/guide/pa-files/PAR-07-004.html]) are emerging for conducting CBPR in substantive areas for which physician leadership could be helpful.

It is timely to familiarize clinical investigators with principles of participatory research and to offer strategies to build effective research partnerships that facilitate clinician leadership in efforts to improve health for all communities. Over several years, we collaborated in exploring ways of blending concepts and approaches from clinical services research and CBPR in research initiatives,¹² research training of physicians in the Robert Wood Johnson Clinical Scholars Program (http://www.hsrcenter.ucla.edu/csp), and a multicenter effort to develop infrastructure to support community-based research.¹³ This approach is based on community-partnered participatory research (CPPR), a form of CBPR developed by Healthy African American Families and Charles R. Drew Medical University with support from the Centers for Disease Control and Prevention (CDC), that emphasizes authentic community-academic partnerships as distinct from many collaborative research activities conducted at community sites without partnership in design, implementation, or product ownership. In collaboration with Keith Norris and Paul Koegel, we blended this model with methods from services research initiatives, such as Partners in Care, that addressed quality disparities.¹⁴ Community-partnered participatory research promotes equal community and academic partnership and power sharing in all phases of research, grounded in evidence-based practice as defined from academic and community perspectives, a framing of CBPR that is suited to physician coleadership.^{12 - 13 ,15}

This Commentary provides lessons learned from these applications. Recent examples are available at http://www.communitytrial.org. Many components of CPPR are partly based on CBPR models^{8 - 9 ,16 - 17} but are organized into a particular approach.

The term community refers to individuals who work, share recreation, or live in an area. Other definitions range from any group with common interests¹⁸ to an approach that raises questions about who defines or represents community and makes decisions.⁹ This focus on geographic areas reflects the emphasis on local capacity building. Partnership approaches are also used in research with health care organizations; one prominent model is the Learning Collaborative (http://www.ihi.org/ihi). Health care system partnership is a more natural fit for physicians, so the focus is on community partnership issues.

Community engagement refers to values, strategies, and actions that support authentic partnerships, including mutual respect and active, inclusive participation; power sharing and equity; mutual benefit or finding the “win-win” possibility; and flexibility in pursuing goals, methods, and time frames to fit the priorities, needs, and capacities of communities.^{9 ,19} What is challenging for physicians is learning what respect means in a community context, sharing planning authority, and understanding the time frame and flexibility required to accommodate the course of events and to build trust.

Community-partnered participatory research is one approach to community program development and collaborative research that emphasizes equal partnership for community and academic partners while building capacity for partnered planning and implementation of research-informed programs. Some experts suggest that equal power sharing is rare in community-based research.⁸

A CPPR project involves a sequence of activities: (1) identifying a health issue that fits community priorities and academic capacity to respond; (2) developing a coalition of community, policy, and academic stakeholders that informs, supports, shares, and uses the products; (3) engaging the community through conferences and workshops that provide information, determine readiness to proceed, and obtain input; and (4) initiating work groups that develop, implement, and evaluate action plans under a leadership council.¹² Having predictable activities can facilitate community entry of physician researchers, particularly when multiple projects are implemented simultaneously, as in training programs.

In a community-partnered participatory research project, academic members become part of the community, community members become part of the research team, and all participants are research subjects, creating a unique working and learning environment. In training programs, stability is enhanced and community engagement is facilitated through consistent faculty and community leadership for each partner organization over time. Community-partnered participatory research is strength-based and celebrates community capacities and project accomplishments, often reinforced through social and creative activities incorporated into meetings and in framing of project goals. The perspectives of diverse community and academic members in a CPPR project can be integrated into agreed-upon priorities and agreements to differ.

Community-partnered participatory research activities and principles are integrated through 3 implementation stages that we refer to as the vision, valley, and victory. The vision is developing the shared view of the goal. The valley is doing the collaborative work, which may be full of challenges. The victory is completing the product and celebrating the process. Project components can exist in different stages. Leaders play a critical role in helping participants identify and progress through stages to avoid losing sight of goals or getting caught in conflicts. As projects evolve, what was once a victory may become a valley and reorientation is necessary to achieve the next victory. For example, working groups might pursue distinct action plans that later must be integrated to achieve impact, requiring a shift from independence to interdependence.

Community-partnered participatory research represents engaged scholarship blended with participatory capacity building. It is a form of CBPR that promotes equal partnership with a strong emphasis on negotiated evidence-based approaches, suitable to physician leadership. The structure of activities, guiding principles, and implementation stages helps participants to move forward while clarifying and tolerating conflicts and differences. Describing the model simply does not mean to suggest that the work is easy or suited to all investigators. Participatory research can be transformative and deeply rewarding at personal and professional levels. The broader public health question is whether such a partnered approach improves outcomes and develops planning capacity relative to alternatives, such as no intervention or no partnership. Developing such evidence will require methods, innovations, rigorous demonstrations, and funders that understand the implications of partnered research for resources, leadership and time frames, and perspectives on evidence.