In Vision Research and the Citizen Scientist, a session held at Prevent Blindness’ 13th Annual Focus on Eye Health Summit, a panel discussion on community-based participatory research (CBPR) addressed social determinants of health, vision, and eye health disparities. The session, moderated by Mabel Crescioni from the Patient-Centered Outcomes Research Institute (PCORI), emphasized the importance of patient-centered approaches, stakeholder engagement, and diverse ways to support inclusive health research.*

Patient-Centeredness and Engagement

Crescioni distinguished between patient-centeredness and patient engagement, terms that are often confused but which are crucial for research design. 

Patient-centeredness ensures that the study questions and outcomes are relevant and low-burden to patients, while patient engagement ensures that patients are involved beyond the role of study participants.

“Engagement impacts the acceptability and feasibility of interventions,” Crescioni explained, “making study results more trustworthy for healthcare decision-making.”

Trust and Inclusive Engagement

Panelists also highlighted the necessity of building trust when working with historically underserved populations, emphasizing the need for genuine community relationships. 

“Communication is critical,” said Dr. Lauren Dasovich, “balancing the needs of patients, researchers, and funding organizations, all while keeping patient care at the center of research efforts.”

In sharing her experiences engaging with Black and Brown communities affected by diabetic retinopathy, Dr. Kristen Harris Wanwu noted the importance of cultural humility. “The answers to what we do are in the community,” she said. “We just need to listen.”

Compensating Partners and Supporting Engagement

The panelists agreed that compensation and resources for patients and community partners are central to effective research engagement. 

“Paying community members for their time and lived experience is crucial,” Wanwu said of her philosophy. “If we can’t build trust immediately, we can start with cash to support their engagement.”

Lauren Dasovich reinforced the point, explaining how their projects have dedicated resources to digital health navigators and other supportive structures to help patients engage meaningfully, especially those facing additional barriers, like visual impairments.

Takeaway

Ultimately, the session stressed the importance of engagement, inclusion, and trust-building in health research, particularly for underserved and minority communities. Through examples from their own work, the panelists demonstrated the success of thoughtful, community-driven research approaches that actively support and compensate partners while prioritizing patient care.

*Prevent Blindness. (2024, July 10 ). Vision Research and the Citizen Scientist [Video file]. Retrieved from https://www.youtube.com/watch?v=I4SHDKg5cCk 

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