1/30/2012 The Nuts and Bolts of Community-Based Participatory Research January 27, 2012 Sponsored by: The Johns Hopkins Institute for Clinical and Translational Research Community Engagement Core 1 Definitions and Characteristics of Community-Based Participatory Research Darius Tandon, PhD Assistant Professor, Johns Hopkins School of Medicine Director, Johns Hopkins ICTR Community Engagement Core January 27, 2012 Johns Hopkins University Institute for Clinical and Translational Research Nuts and Bolts of CBPR 2 Objectives of Today’s Workshop • To provide participants with an understanding of community-based participatory research (CBPR) definitions and characteristics • To highlight several key considerations related to starting a CBPR project • To illustrate via case examples how existing JHU-based community-university partnerships have started and implemented CBPR projects 3 1
1/30/2012 Today’s Agenda • Definitions and Characteristics of CBPR • Case Study: Putting CBPR into Practice • Key Issues in Getting Started #1 – Coming together of university and community – Selecting community partners • Group Activity: Selecting Community Partners • Key Issues in Getting Started #2 – Selecting research questions & research design – Planning for sustainability • Case Study: Starting a CBPR Project 4 What is Community-Engaged Research? • Research that involves community in the research process • Broad spectrum of community-engaged research – Community-placed/based; no community-researcher collaboration – Community-placed/based; some community-researcher collaboration – Community-based participatory research 5 What is Community-Based Participatory Research (CBPR)? “A collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings”. --W .K. Kellogg Foundation (2001) 6 2
1/30/2012 What CBPR is NOT 1. “Community - placed/based” research 2. Sporadic or symbolic inclusion of communities 3. A specific method or research design 7 Characteristics of CBPR 1. Collaborative, equitable partnership in all phases of research 2. Community is the unit of identity 3. CBPR builds on strengths and resources of community 4. CBPR fosters co-learning and capacity building 5. Balance between knowledge generation and benefit for community partners 8 Characteristics of CBPR (Cont…) 6. CBPR focuses on problems of local relevance 7. CBPR disseminates results to all partners and involves them in wider dissemination of results 8. CBPR involves a long-term process and commitment to sustainability Israel, Eng, Schulz, & Parker (2005). Introduction to Methods in Community-Based Participatory Research for Health. In Methods in Community-Based Participatory Research for Health. 9 3
1/30/2012 Present Day Context of CBPR • CBPR becoming inclusive phrase to characterize participatory research approaches with an explicit social change focus – Those within the social sciences may refer to this approach as participatory research or participatory action research • CBPR taking place in Public Health, Medicine, Psychology, Sociology, Anthropology, Urban Planning, and other disciplines 10 Evidence of CBPR Growth and Prominence Nationally • Centers for Disease Control & Prevention Funding – RFP’s for CBPR – REACH 2010 Program – Prevention Research Centers • National Institutes of Health Funding – RFA’s explicitly calling for CBPR (multiple institutes) – RFA’s allowing for CBPR approaches – CTSA Community Engagement cores 11 Evidence of CBPR Growth and Prominence at JHU • Multiple Centers/Institutes conducting CBPR • Investigators from SOM, SPH, SON conducting CBPR • Graduate seminars on CBPR • ICTR Community Engagement Core 12 4
1/30/2012 Why is CBPR Relevant for Clinical and Translational Research? • Widening socioeconomic and health disparities • Length of time to translate research into practice • Difficulty in moving from efficacy to effectiveness 13 How is CBPR Relevant for Clinical and Translational Research? 1. Development of research questions that reflect health issues of real concern to community -- Community helps select health topic AND define research question(s) --Local knowledge about a health topic is combined with research/data --Needs assessments common in early phases of CBPR projects 14 How is CBPR Relevant for Clinical and Translational Research? 2. Development of recruitment and retention strategies -- Where should recruitment take place? --What are incentives that will keep participants engaged? --Are there community-based organizations that can destigmatize participation in study? --Can community members be hired to help with recruitment and retention? 15 5
1/30/2012 How is CBPR Relevant for Clinical and Translational Research? 3. Development of contextually/culturally appropriate intervention strategies --Selecting time and location of intervention --Identifying skills/experiences needed for intervention staff; hiring community members to fill these roles --What experience does the community have with other interventions? 16 How is CBPR Relevant for Clinical and Translational Research? 4. Translating efficacious intervention into new and/or community settings – Variability in culture, resources, organizational capacity, etc. – CBPR emphasizes working with local stakeholders to create adaptations to new, diverse settings – Adaptations take advantage of strengths/resources of community setting 17 How is CBPR Relevant for Clinical and Translational Research? 5. CBPR can improve reliability and validity of measurement tools and process for data collection --Selection of appropriate instruments and/or creation of appropriate questions if existing instruments do not exist --Hiring and training community members to assist with data collection can help with language/cultural barriers and apprehension about joining research study 18 6
1/30/2012 How is CBPR Relevant for Clinical and Translational Research? 6. CBPR can assist in interpretation of research findings and increase relevance/usefulness of findings – Are researcher interpretations of data the same as community? – What if data do not show expected direction/hypothesis — can community partners help interpret? – How should data be presented to the community in a way that community benefits from findings? 19 How is CBPR Relevant for Clinical and Translational Research ? 7. CBPR can help in sustaining programs beyond initial grant period – Through community stakeholders’ networks, integration of programs with existing programs/structures can be facilitated – Local ownership of intervention/program likely to be greater because of ongoing collaboration – Capacity of community partners has been built during project 20 Project Initiation 21 7
1/30/2012 Project Initiation: Key Steps 1. “Coming together” of university and community 2. Selecting key community partners 3. Defining problem & research question(s) 4. Determining research design 5. Discussing sustainability 22 Project Initiation: Coming Together of University & Community • University or community can initiate partnership • Mutual concern for community of interest’s health status 23 Coming Together of University & Community: Challenges and Facilitators Facilitators: Challenges: • Forge relationships with • Distrust of academic existing CBPR projects institutions & researchers “outside” the community • Books, newspapers, other • Understanding media & published reports communities’ social, describing community landscape economic, & political landscape • Attending community events/forums and talking with key community members 24 8
1/30/2012 Project Initiation: Selecting Key Community Partners • Identify stakeholders that need to be “at the table ” – Be attentive to dynamics among potential community collaborators • Need to consider the multiple phases of your project • Need to be clear about stakeholders’ roles/responsibilities when asking them to collaborate 25 9
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