“Being treated as the expert:” A blueprint for a community advisory board approach to elevate the voice of people with living experience with substance use in academic research

Authors

• Trevor Moffitt, University of KentuckyFollow
• Survivors Union of the Bluegrass
• Bryson Henson, University of Kentucky
• April M. Young, University of KentuckyFollow
• Sharon L. Walsh, University of KentuckyFollow
• Rachel Vickers-Smith, University of KentuckyFollow
• Junior Cruz, University of Kentucky
• Jeremy Byard, Alchemy-KY
• Brook West, Voices of Hope
• Amanda Fallin-Bennett, University of KentuckyFollow

Abstract

Introduction: Researchers have traditionally engaged Community Advisory Boards (CABs) to meaningfully involve community members in the research process. However, CABs are often formed only after a grant is funded, leading to criticisms of functioning merely as “ethical approvers.” For substance use researchers, the inclusion of people with living experience (PWLE; current experience with drug use) across all stages of research is especially important as they have historically been the experts in the needs of their community.   Methods: In response to this need for community engagement in research, the University of Kentucky, in partnership with a local recovery community center (RCC; Voices of Hope), established the Survivors Union of the Bluegrass (SUB). The SUB is a stand-alone CAB (i.e., not tied to any particular research study) comprised of PWLE. Biannually, the SUB leadership team conducts quality improvement process evaluation focus groups with SUB members.   Results: The SUB has held 33 monthly meetings with 52 university substance use research teams, all unanimously approved by members to attend. Members identified benefits to participating in the SUB, felt researchers treated them as experts, and supported other institutions establishing similar boards. Members also described feelings of belonging and empowerment, and valued being viewed as experts.   Conclusion: To our knowledge, the SUB is one of the first CABs comprised of PWLE housed at a university that is not tied to a specific study or project. The SUB’s high retention rate and member feedback demonstrate the benefit of meaningfully involving PWLE throughout the research process.

Document Type

Article

Publication Date

2026

Notes/Citation Information

© The Author(s), 2026. Published by Cambridge University Press on behalf of Association for Clinical and Translational Science. This is an Open Access article, distributed under the terms of the Creative Commons Attribution-NonCommercial licence (https:// creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original article is properly cited. The written permission of Cambridge University Press or the rights holder(s) must be obtained prior to any commercial use.

Digital Object Identifier (DOI)

https://doi.org/10.1017/cts.2026.10242

Funding Information

The Survivors Union of the Bluegrass is funded by the University of Kentucky Substance Use Priority Research Area (SUPRA), National Center for Advancing Translational Sciences through grant number UL1TR001998, and Voices of Hope.

Repository Citation

Moffitt, Trevor; Survivors Union of the Bluegrass; Henson, Bryson; Young, April M.; Walsh, Sharon L.; Vickers-Smith, Rachel; Cruz, Junior; Byard, Jeremy; West, Brook; and Fallin-Bennett, Amanda, "“Being treated as the expert:” A blueprint for a community advisory board approach to elevate the voice of people with living experience with substance use in academic research" (2026). Nursing Faculty Publications. 87.
https://uknowledge.uky.edu/nursing_facpub/87