Black individuals experience disproportionately adverse impacts of substance use disorder (SUD). They are also far less likely to receive evidence-based SUD treatment, partly due to the scarcity of patient-centered outcomes research (PCOR) and comparative clinical effectiveness research (CER) on culturally effective treatments. Black individuals are under-represented in PCOR/CER on SUD treatments, and geographic variations in the incidence of SUD among Black individuals exacerbate this under-representation. This project combines the strengths of three organizations – NEHI, Community Catalyst, and Black Faces Black Voices – to engage a population in PCOR/CER on telehealth solutions for SUD.
- Convene a patient-advisory group (PAG) comprising Black individuals with SUD; advise the PAG on developing initial operating guidelines and a governance model;
- Based on a PAG-researcher convening, make recommendations for establishing an ongoing relationship between the groups;
- Iterate the PAG structure based on insights learned from the convening so it may continue to advise researchers;
- Motivate researchers to engage with the PAG in pursuing work that advances effective telehealth SUD treatment.
Phase One of the project, which the project team concluded in December 2023, consisted of semi-structured qualitative interviews with 19 Black individuals who have lived experience with SUD. See the video below for the project team’s overview of Phase 1. In Phase Two, we will convene patients to form a PAG and a group of researchers. Phase Three will be a PAG-researcher meeting. We will produce a Guidance Report and webinar that describes the process, findings, and recommendations. In the long term, the project expects to create standardized, sustainable ways to engage select patient populations in PCOR/CER and improve the outcomes for under-represented individuals seeking SUD treatment.
Phase 1 Recap:
Additional Project Lead:
President and CEO, NEHI
Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (#EACB-30380)