How Can Community Influence Research? Community-Based Participatory Research Day Had the Answer
Research that bridges the gap between researchers and community members was the focus at Community-Based Participatory Research (CBPR) Day on December 3. The event, co-sponsored by the Center for Community Health and Prevention and UR CTSI, brought together over 80 researchers and community representatives for presentations, workshops, and networking opportunities to educate and equip them for collaboration.
“CBPR is an approach to research that emphasizes the agency and expertise of community members and patients in knowing their health needs and that of their communities,” said Laura Sugarwala, MBA, RD, director of community partnerships for the Center for Community Health and Prevention.
“When they form collaborative connections with researchers interested in addressing community health challenges, the research becomes more viable, and community members can help spread the word about clinical research study participation opportunities and provide valuable insight as to which direction a project should take to maximize benefit for all involved.”
The community emphasis was evident to participants from across the greater Rochester region. Karen Rogers, MPA, is the owner of EE Pathways, a woman- and minority-owned organization that aims to reduce health disparities by offering fitness and mental health programs to historically disadvantaged communities.
“I see Community-Based Participatory Research relevant to EE Pathways and those with whom I work as a bridge for community and institutions to have unique collaborations,” Rogers said. “Instead of working in silos, we come together to build a robust partnership which is engaging, resourceful, and educational.”
Rogers co-led one of the event’s breakout sessions with Diane Morse, MD. Their session on the Pathways to Health program provided a model and lessons learned to attendees interested in community outreach.
“This program allowed us to study the impact of adding strategies to increase trust and acceptance of medical care in disenfranchised communities,” Rogers said. “We did this through focus groups, co-locating staff, and meeting together weekly.”
Members of the Patient-Research Alliance for Inspiring Research Solutions (PAIRS) also attended the event. The PAIRS program helps form researcher-community partner collaborations leading to community-focused research and further networking opportunities between these spaces.
The attendees benefited from programming facilitated by Hillary Edwards, PhD, MPH, and Janice Tufte, patient advisor and Patient-Centered Outcomes Research Institute Ambassador. Their workshop focused on the principles of equitable and meaningful patient-community engagement in research.
Edwards served as the event’s keynote speaker. Edwards is the director of research with the PATIENTS Program in the Department of Practice, Sciences, and Health Outcomes Research at the University of Maryland School of Pharmacy. During the lunch keynote, they presented “Continuous Engagement: A Roadmap in Ten Steps,” outlining community-focused work through the PATIENTS Program. Founded in 2013, the program encourages patients and caregivers to help design, conduct, and share the results of research projects that address community health challenges.
“In CBPR, community partners are involved at every step of the research process, including planning the study, conducting the study, and disseminating study results,” Edwards said.
“This approach ensures that research—particularly around social and structural determinants of health—centers the lived experiences of those affected by the gaps we seek to address, and that research outcomes are meaningful, relevant, and considerate of community priorities.”
Edwards sees value in events like CBPR Day in bringing together collaborators from different backgrounds to build sustainable research partnerships.
“I enjoyed hearing all the narratives, as CBPR is not a one-size-fits-all approach,” they said. “It is a toolbox to help partners communicate, participate, and be accountable to one another when working together. I especially appreciated the transparency and authenticity participants brought to the breakout sessions.”
CBPR Day programming started with “lightning talks” presentations—four-minute overviews of research projects and initiatives involving community collaboration and outreach. Morning and afternoon breakout sessions offered attendees the opportunity to learn about specific initiatives and take part in smaller-group discussions.
You can learn more about CBPR via the training course page offered by UR CTSI. The next registration period is tentatively planned for early to mid-2025, with the course beginning in the fall. UR CTSI also offers a community engagement consultations for research service. A follow-up CBPR Day is tentatively planned for late 2025.
Jonathan Raab | 1/8/2025
