Centering Community Voices in Research: Building Sustainable Engagement for Telehealth and SUD Treatment

What does it mean to truly center people in research—especially those too often left out of the conversation? Our recently completed project, Capacity Building for Patient Engagement in PCOR on the Effective Use of Telehealth in SUD Treatment, offers an answer rooted in experience, equity, and co-creation. 

Funded by a Eugene Washington PCORI Engagement Award, this project set out to better understand how to meaningfully involve Black individuals in the Appalachian region with lived experience of substance use disorder (SUD) in patient-centered outcomes research (PCOR) and comparative effectiveness research (CER). Through qualitative interviews, the creation of a Patient Advisory Group (PAG), and structured convenings with researchers, we surfaced key insights into what true partnership in research requires. 

Here’s what we learned—and why it matters:

• Engagement must be relational, not transactional. Trust cannot be built during the short span of a research study. It must be cultivated through consistent engagement, cultural humility, and shared decision-making. 
• Telehealth can widen access—but only if it’s responsive. Many participants valued the flexibility telehealth offered, but emphasized that it must be culturally competent, technically accessible, and used with discretion—not as a one-size-fits-all solution. 
• Community voices strengthen research. When researchers and patients engage as equal partners, research questions become more relevant, findings more actionable, and outcomes more equitable. 
• Structures matter. Sustained funding, institutional support for advisory groups, and the role of trusted community connectors are essential to maintaining engagement beyond a single project. 

Why This Project Matters Now

Black communities continue to face disproportionate harm from the opioid crisis, yet remain underrepresented in both treatment and research. This project demonstrates that it’s not enough to invite people to the table—we must reimagine the table itself. 

We hope this project inspires researchers, funders, and institutions to build engagement that lasts—because equity demands more than good intentions. It requires action, accountability, and above all, listening.