Community-Based Participatory Research: A Summary of the Evidence on Research Methodology and Community Involvement Presented by Meera Viswanathan, PhD*, Alice Ammerman, DrPH, RD, Gerald Gartlehner, MD, MPH, Eugenia Eng PhD, Kathleen N. Lohr, PhD, Lucille Webb, MA

Meera Viswanathan, PhD, 1 Alice Ammerman,DrPH, RD, 2 Gerald Gartlehner, MD, MPH, 3 Eugenia Eng PhD, 4 Kathleen N. Lohr, PhD 1, Lucille Webb, MA 5 1 Health, Social, and Economic Research, RTI International, Research Triangle Park, NC Department of Nutrition, School of Public Health, University of North Carolina, Chapel Hill, NC Cecil G. Sheps Center for Health Services Research, University of North Carolina, Chapel Hill, NC Department of Health Behavior and Health Education, CB #7440, School of Public Health, University of North Carolina, Chapel Hill, NC Strengthening the Black Family, Inc., Raleigh, NC Funded by Agency for Healthcare Research and Quality Research Team

Evidence-Based Review of CBPR Context for the evidence-based review of CBPR – Health disparities persist – Knowledge is not always translated into appropriate action in communities of need – Community-based participatory research (CBPR) offers an alternative approach to translating research into practice

Evidence-Based Review of CBPR Research Questions – How has CBPR been implemented to date with regard to the quality of research methodology and community involvement? – What is the evidence that CBPR efforts have yielded the intended outcomes?

Evidence-Based Review of CBPR Identify and refine key scientific questions through n Consultation with a large group of experts prior to the study n Consultation with a standing Technical Expert Advisory Group during the course of the study Identify sources of evidence to address key questions n MEDLINE ® n Psycinfo Generate consistent search terms for each source Conduct searches and compile all obtained literature Evaluate each study against prespecified criteria n Sociofile n Cochrane Collaboration resources All included studies meet the following criteria: n English language n Set in U.S. or Canada Extract data from each study using a data abstraction form Synthesize data Judge strength of evidence Report results n Health outcome n At least one community collaborator Systematic Review Methods Design a data abstraction form Conduct additional searches where necessary to obtain all published articles relevant to a study

Evidence-Based Review of CBPR CharacteristicsNumber General characteristics Total number of studies identified 60 Average number of publications per study 2 Publication dates of the first article from the study Percent Before % % % % % 2001 to % Characteristics of CBPR studies

Evidence-Based Review of CBPR Substantive TopicsPercent General health concerns 18% Environmental hazards 15% Hypertension/heart disease/diabetes 13% Services for HIV/AIDS 10% Substance abuse including smoking 8% Cancer screening and prevention 7% Women ’ s health 7% Asthma prevention 3% Occupational health 3% Seniors ’ health 3% Other miscellaneous concerns (disabilities, hospice access, childhood immunization, nutrition, mental health) 12% Characteristics of CBPR studies

Evidence-Based Review of CBPR Type of funding sources (of all identifiable funding sources) Percent Federal agencies 57% National Institute of Environmental Health Sciences15% Centers for Disease Control and Prevention13% National Cancer Institute4% US Environment Protection Agency4% National Institute on Alcohol Abuse and Alcoholism3% Other agencies19% Foundations or private sources 20% W.J. Kellogg Foundation4% Robert Wood Johnson Foundation3% Other foundations or private sources13% State funding 15% Universities 8%

Type of Study and Research Design

Application of Findings to Health Concern Identified Dissemination of Findings Interpretation of Findings Intervention Development, Implementation Measurement Instruments and Data Collection Recruitment and Retention Study Design Financial Responsibility for Grant Funds Proposal Development Selection of Research Question Type of Community Involvement Community Involvement

Comparing Research Quality and Community Involvement across Study Designs

Evidence-Based Review of CBPR Research Questions – How has CBPR been implemented to date with regard to the quality of research methodology and community involvement? – What is the evidence that CBPR efforts have yielded the intended outcomes?

Implementing CBPR: Research Quality We found very few complete and fully evaluated interventions that provide detailed information on community-based components Limitations on funding length and flexibility  incomplete or unevaluated intervention Limitations on page length in journals  incomplete documentation in peer reviewed journals However, we did not find evidence that high- quality scores in community collaboration are associated with low-quality scores for research

Implementing CBPR: Level of Community Involvement Community involvement extends through all areas of research with variable involvement in different stages. Self reported benefits include: – community involvement leading to greater participation rates – increased external validity – decreased loss of followup – increased individual and community capacity

Implementing CBPR: Level of Community Involvement Disadvantages of such methods, although infrequently reported, include: – loss of internal validity – introduction of selection bias – lack or loss of randomization if contamination occurs – highly motivated intervention groups not representative of the broader population

Achieving Intended Outcomes: Improving Research Quality Reports of improved research quality through the CBPR approach were primarily anecdotal Possible solutions: – A head-to-head test of CBPR versus conventional research? Conclusive proof vs. thorny ethical issues – CBPR researchers should present the potential costs and benefits of CBPR, and document these in the course of their research

Achieving Intended Outcomes: Enhancing Community Capacity Authors rarely cited enhanced community capacity as an explicit goal of their projects, although it was often included in descriptions of the collaborative process Studies were much more likely to report capacity building on the part of the community than on the part of the researchers or their institutions Studies that report a higher level of community involvement were more likely to recognize and report capacity building on the part of the researchers

Achieving Intended Outcomes: Improving Health Outcomes Stronger or more consistent positive health outcomes were generally found in the higher quality research designs Unintended positive health outcomes (or intended, but unrelated to intervention) likely? – Yes Measured in these studies? – No

Implications for Practice Proof of concept: – High quality research and intense community involvement are not contrary to each other. Our review uncovered several examples of outstanding research combined with collaborative community participation throughout the research process

Questions ?

Meera Viswanathan, PhD Health, Social, and Economic Research, RTI International