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Academic Medicine:
doi: 10.1097/ACM.0b013e3181b6afd0
Commentary

Commentary: Not About Us Without Us

Casale, Cecilia Rivera PhD; Clancy, Carolyn M. MD

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Author Information

Dr. Rivera Casale is senior advisor for minority health, Agency for Healthcare Research and Quality, Rockville, Maryland.

Dr. Clancy is director, Agency for Healthcare Research and Quality, Rockville, Maryland.

Correspondence should be addressed to Dr. Rivera Casale, 540 Gaither Rd., Rockville, MD 20850; e-mail: (Cecilia.Casale@ahrq.hhs.gov).

Editor’s Note: This is a commentary on Moreno G, Rodriguez MA, Lopez GA, Bholat M, Dowling PT. Eight years of building community partnerships and trust: The UCLA family medicine community-based participatory research experience. Acad Med. 2009;84:1426–1433.

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Abstract

Disparities in health care are pervasive, but the patterns vary substantially across the nation. Solutions to eliminate health care disparities associated with patient race, ethnicity, income, education, geography, and other factors must be customized to address the specific circumstances of each community. The urgency of addressing disparities exceeds the available evidence to do so. In this context, community-based participatory research (CBPR) offers an appealing strategy to develop the requisite evidence while improving care.

Using case studies from their experience, Moreno and colleagues convey a thoughtful, realistic account of the University of California, Los Angeles Family Medicine CBPR experience focused on addressing disparities in health and health care among racial/ethnic minority immigrant populations in a Los Angeles County community. This report highlights both the potential for community transformation and the challenges encountered by medical student researchers in the quest to establish meaningful partnerships that promote and value community members’ contributions to the research areas under study, with the goal of improving health outcomes and reducing health care disparities.

The authors of this commentary believe that the ongoing national debate addressing the need to reform the health care system in the United States and reduce health and health care disparities for underserved populations will bring increased focus on applying the tenets of CBPR. Sustaining relevant health care services research that engages community partners, researchers, and funders is a promising model of community engagement with potential for replication and sustainability.

The concept of community-based participatory research (CBPR) is rooted in the teachings of Paulo Freire,1 who in the 1960s developed an approach to education based on empowerment and “dialogical and liberating education,” where change in the built environment takes place as a result of the engagement between teacher and student. With community input, Freire developed, tested, and implemented pragmatic methods and tools to engage underserved communities in the learning process with the goal of transforming their reality to achieve social justice.

Freire’s critique of traditional education, in which individuals and communities are allowed to receive, file, and store packaged information, rather than developing their capacity for inquiry and critical thinking, can be applied to traditional research methods. Traditionally, “subjects” are passive participants and findings lack practical applications, since they may not reflect a community’s reality. Moreover, traditional research approaches miss the opportunity to learn from community participants.

To bridge the gap between researchers and community participants and engage communities as full partners and transformers of their own reality through CPBR, nine principles must be observed: (1) acknowledge the community, (2) foster co-learning and capacity building for all, (3) build on strengths and resources within the community, (4) integrate and achieve a balance of all partners, (5) facilitate collaborative, equitable partnership in all phases of the research, (6) focus on the local relevance of the research, including social and environmental determinants of health, (7) create a cyclical process of learning, (8) disseminate findings and knowledge gained to all partners, and involve all partners in the dissemination process, and (9) plan for long-term process and commitment.2

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Health Care Disparities

According to the Agency for Healthcare Research and Quality’s3 2008 National Health Disparities Report, “Health care disparities are the differences or gaps in care experienced by one population compared to another population.” The report points out that these disparities are due to differences in access to care, provider biases, limited provider–patient communication, poor health literacy, and providers’ disregard for patients’ cultural values, among other factors. Three themes emerged from the 2008 report:

* Disparities persist in health care quality and access.

* The magnitude and pattern of disparities are different within subpopulations.

* Some disparities exist across multiple priority populations.

In short, disparities in health care are pervasive, but the patterns vary substantially across the nation. Solutions to eliminate disparities in health care associated with patient race, ethnicity, income, education, geography, and other factors must be customized to address the specific circumstances of each community. The urgency of addressing disparities exceeds the available evidence to do so. In this context, CBPR offers an appealing strategy to develop the requisite evidence while we improve care.

Through the case studies presented by Moreno and colleagues4 in this issue, the authors convey a thoughtful, realistic account of the University of California, Los Angeles (UCLA) Department of Family Medicine CBPR experience focused on addressing disparities in health and health care among racial/ethnic minority immigrant populations in the Sun Valley area of Los Angeles County. The authors highlight both the potential for community transformation and the challenges encountered by medical student researchers in the quest to establish meaningful partnerships that promote and value community members’ contributions to the research areas under study, with the goal of improving health outcomes and reducing health care disparities.

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Insights for Community Leaders, Researchers, and Funders

The UCLA–Sun Valley experience presented through the case studies highlights the importance of partnering with community leaders and residents in all aspects of the research process, including discovery, planning, development, implementation, and evaluation of a research proposal, as well as research dissemination and adoption activities. Unlike traditional academic research, this learning approach requires the community to be a full partner in the research process, and it provides an effective path to address community concerns regarding health care disparities that affect them. It also provides an opportunity to integrate multiple activities with a common focus to maximize potential impact.

Community partner organizations involved in this type of co-learning often express the need to receive training in CBPR methods and tools that are available in order to fully participate in the process.5 An important component of CBPR is to assess the level of “readiness” for each of the partners to undertake this type of research. Training and education for community leaders and residents, researchers, and funders should be part of the planning phase before initiating a project. Through education and training activities, partners get to know one another and work to develop mutual trust, to establish open lines of communication, to learn the differences between traditional research and CBPR, to develop culturally appropriate tools and research methods, and to define each partner’s roles and responsibilities. As Moreno and colleagues indicate, CBPR has the potential to transform the social and environmental conditions that contribute to health and health care disparities and that are identified as priorities by their own members.

Including CBPR in medical school curricula and involving UCLA medical students in community medicine activities is an exciting model that could be broadly replicated. In this model, communities selected the three areas of research concentration, and students and community residents worked together to collect data and analyze the results, and they decided to address asthma, diabetes prevention, and access to primary care. Effective community–researcher partnerships need to balance local decision making through consensus building and negotiation, using data collection findings and culturally appropriate research tools to support community members in the selection of criteria used to focus on priority areas with high impact potential.

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The Path Forward

Community and academic researchers experienced in CBPR recommend the following essential strategies for researchers:

* Hire and train community members identified as “natural leaders” by their peers as part of the research team. This can be an effective way to validate the contributions that community residents can offer to the project, and it facilitates engagement of diverse community members who feel represented through their own members. Building local capacity through research skills and abilities can improve sustainability at the end of the initial funding cycle.

* Strive for a balance between the best research methodology and community collaboration, and maintain an open dialogue to negotiate and reevaluate community priorities as part of the learning process.

* Create an atmosphere that promotes bidirectional learning so that academic researchers and community members gain from each other’s expertise.

* Document collaboration processes and lessons learned through relevant data collection and continuous evaluation.

* Learn to communicate effectively with the community using culturally appropriate language and terms adapted to the literacy levels of the audience to be inclusive of all members and create open channels of effective communication.

Just as communities and academic researchers experience challenges as they embark in CBPR, funding organizations (public and private) struggle to adapt their standard requirements to provide adequate funding that reflects the realities of CBPR, and expand funding mechanisms and cycles to provide opportunities for community input. Because it generally takes longer for CBPR to take root and for partnerships to be established compared with other programs, communities and researchers continuously ask funders to expand the scope of allowed activities to include translation, implementation, and sustainability that will allow partnerships to continue over time and enhance research capacity at the local level.6 To ensure continuity in CBPR funding to communities, federal agencies and private funders should work together to advance the field of CBPR and increase incentives for community-based organizations and academic institutions to conduct CBPR and establish long-lasting and sustainable partnerships with communities.

We believe that the ongoing national debate addressing the need to reform the health care system in the United States and reduce health and health care disparities for underserved populations will bring increased focus on application of the tenets of CBPR. Sustaining relevant health care services research that engages community partners, researchers, and funders is a promising model of community engagement with potential for replication and sustainability. Such approaches bring together individuals and organizations committed to the success of community-led research and efforts to reduce health care disparities.

The methods, tools, and findings from CBPR need to be effectively disseminated to target diverse audiences, including patients, families, health care providers covering a wide range of settings, policy makers, and the public at large. CBPR findings should be a relevant resource to policy makers to ensure the translation of research findings into policies and interventions that can directly reduce disparities in health and health care for underserved communities.

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References

1 Freire P. Pedagogy of the Oppressed. London, UK: Penguin Books; 1972.

2 Israel BA, Eng E, Schulz AJ, Parker EA, eds. Methods in Community-Based Participatory Research for Health. San Francisco, Calif: Jossey-Bass & Co.; 2005.

3 National Healthcare Disparities Report. Rockville, Md: U.S. Department of Health and Human Services, Agency for Healthcare Research and Quality; 2008.

4 Moreno G, Rodriguez MA, Lopez GA, Bholat M, Dowling PT. Eight years of building community partnerships and trust: The UCLA family medicine community-based participatory research experience. Acad Med. 2009;84:1426–1433.

5 Wallerstein N, Duran B. Using community-based participatory research to address health disparities. Health Promot Pract. 2006;7:312–323.

6 Viswanathan M, Ammerman A, Eng E, et al. Community-Based Participatory Research: Assessing the Evidence. Rockville, Md: U.S. Department of Health and Human Services, Agency for Healthcare Research and Quality; 2004. Publication no. 04-E022-2.

© 2009 Association of American Medical Colleges

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