Community-based participatory research (CBPR) is an approach to health and environmental research meant to increase the value of studies for both researchers and the communities participating in a study. The CBPR approach is particularly attractive for academics and public health professionals struggling to address the persistent problems of health care disparities in populations that the U.S. Department of Health and Human Services has designated as priority populations (including racial and ethnic minorities; low-income, rural, and inner-city populations; women; and children).
Introduction
Community-based participatory research (CBPR) is an approach to health and environmental research meant to increase the value of studies for both researchers and the communities participating in a study. In 2001, the Agency for Healthcare Research and Quality (AHRQ) collaborated with several Federal agencies and the W.K. Kellogg Foundation to convene a 2-day conference designed to address three key barriers to CBPR:
- Insufficient community incentives (i.e., staffing and resources) to play a partnership role in CBPR projects.
- Insufficient academic resources (i.e., staffing and resources) for researchers to play a partnership role in CBPR projects.
- Inadequate funding and funding mechanisms that are not sensitive to community involvement.
The conference recommended that AHRQ commission one of its Evidence-based Practice Centers (EPC) to study existing evidence on the conduct and evaluation of CBPR. As a result, in 2004, AHRQ published the RTI International-University of North Carolina EPC’s systematic review and synthesis of the scientific literature regarding CBPR and its role in improving community health.*
A formal definition of CBPR was developed for this EPC Report:
” Community-based participatory research is a collaborative research approach that is designed to ensure and establish structures for participation by communities affected by the issue being studied, representatives of organizations, and researchers in all aspects of the research process to improve health and well-being through taking action, including social change.”
The CBPR approach is particularly attractive for academics and public health professionals struggling to address the persistent problems of health care disparities in populations that the U.S. Department of Health and Human Services has designated as priority populations. These populations include historically underrepresented populations, such as racial and ethnic minorities; low-income, rural, and inner-city populations; women; and children.
Benefits
When conducted properly, CBPR benefits community participants, health care practitioners, and researchers alike. It creates bridges between scientists and the communities that participate in the study through the use of shared knowledge and valuable experiences. By involving members of the community in the research design, the collaboration lends itself to:
- The selection of a relevant research question.
- Development of culturally appropriate measurement instruments.
- A deeper understanding of the community’s unique circumstances.
Community involvement helps recruit subjects and reduces possible distrust of researchers and public health professionals as “outsiders.” In many cases, community involvement helps build its capacity to participate in future research. Community involvement helps researchers develop ways of communicating and implementing their findings within the community and to academic and clinical peers. Finally, participatory research collaborations can help bring in needed funding, assist in developing proposals for new programs, and aid in developing comprehensive evaluations of community needs. Community groups often cannot do these things on their own. In many instances, community members’ involvement in research has had a profound impact on environmental health issues and social determinants of health.
Approaches
In one approach to CBPR, community-based organizations or community groups partner with academic researchers to ensure that selected research topics are relevant and responsive to their identified needs. These groups may be churches, church members, neighborhood organizations, community residents, or other social organizations. These groups play a direct role in the design and conduct of the research study by:
- Bringing community members into the study as partners, not just subjects.
- Using the knowledge of the community to understand health problems and to design activities that improve health care.
- Connecting community members directly with how the research is done and its results.
- Providing the immediate benefits of the research results to the community that participated in the study.
In CBPR, community members are also involved in dissemination of research and findings. This involvement can help improve the quality of life and health care in the community by putting new knowledge in the hands of those who need to make changes. Practice-based research networks (PBRNs), consisting of community-based practices that come together to conduct health care research, can be another partner in working with the community. AHRQ funds a number of PBRNs for health services research, and the members of these networks are often closer than academic researchers to the local geographic area, and have more direct involvement with priority populations. A number of AHRQ-funded studies that PBRNs conduct use CBPR as the research model.
Challenges
In previous EPC Reports, it was noted a number of challenges facing the growth of CBPR. These include:
- Improving research quality by researchers selecting the strongest possible study design, measurement approach, data collection plan, and analysis strategy that provides some benefit to all participants from the community.
- Ensuring that capacity-building in collaborative research occurs for both the community and the research team.
- Educating funding organizations to develop Requests for Applications that adhere to CBPR principles.
- Improving the quality of reports on CBPR studies published in the peer-reviewed literature.
Present & Upcoming Grant Projects
Behavioral & Mental Health, Substance Abuse & Disability Support Project This project is an ongoing initiative to analyze and satisfy the deficiencies of support as it relates to this population of individuals in our communities. This is an intense initiative that will involve the training and mentoring of carefully selected candidates to collect data to then be analyzed by the research team for database.
Stroke Telemedicine Access Recovery Project This career-development award provides training and mentoring in CBPR to a clinician-scientist providing pilot data for a study of barriers to successful implementation of a rural hospital’s community-based Stroke Telemedicine Access Recovery, or STAR, project.
Building Health Services Research Capacity for the Underprivileged and Undeserved Populations within the Inner Cities. This grant project is envisioned to support inner city communities throughout the United States and to build capacity to address priority health issues identified by the establishments to build capacity and infrastructure for community participatory research focused on health promotion, prevention, and management of chronic diseases; and increase support for culturally appropriate health programs and for the role of traditional medicine practitioners.
Communities as Partners in Cancer Clinical Trials Community- Campus Partnerships for Health. This grant project is envisioned to support a three-part conference series to create a conceptual framework for communities as partners in cancer clinical trials and explores the application of CBPR principles and approaches to key areas of cancer research.
Exploring the Role of Secondary Conditions in Nursing Home Transitions This study uses CBPR principles to understand the role of secondary conditions in transition from the nursing home to the community and uses this understanding to modify a previously demonstrated intervention project.
Faith Based Organization’s Health Movement This study will explore the role of Faith Based Organizations in our communitiesin providing services to congregants and others during a period when health care organizations were less accessible to members of the FBO in the community. The lessons learned are of critical importance to health disparities researchers.
A National Assisted Living CBPR Partnership to Improve Medication Management This grant project is anticipated to provide support to a national partnership of organizations concerned with improvement of assisted living through application of CBPR principles. Initial efforts are to improve medication management within assisted living facilities.
The Creation of PBRN to Study Health Care Delivery to a Transitioning Community This study will use a collaboration between academics, primary care ambulatory clinics, and community health organizations to understand the under use of health care resources to minorities.
Community Integration After Spinal Cord Injury. This study will apply participatory methodology to focus research on issues of greatest relevance to individuals with spinal cord injuries. It will train the subjects in the use of cameras to document the barriers and facilitators they encounter in the community, using semi structured individual interviews to provide additional information.
Making Chronic Kidney Disease Guidelines Work in Undeserved Practices Chronic kidney disease, a worldwide public health issue, is four times more likely to burden minority populations. This study will seek to use participatory research methods to assess provider- and staff identify barriers to implement evidence-based guidelines for chronic kidney disease in minority populations.
Care Republic’s National Conference on Care: Quality Health Care for Diverse Populations. This grant project is envisioned to highlight the best of culturally competent health care to national health organizations and leaders, including communities.
Overcoming Health Racial Disparities, The goal of this project was to understand and eliminate health disparities for adult cancer and other chronic illness among black adults, particularly rural black populations.
Adult Health and Disabilities in Housing Public Housing The project will seek to explore low-income minorities with Disabilities and their access to healthcare and community resources and support that are available.