Project Summary

Background: Black individuals experience disproportionately adverse impacts of substance use disorder (SUD). They also are far less likely to receive evidence-based SUD treatment, in part due to the paucity of patient-centered outcomes research (PCOR) and comparative clinical effectiveness research (CER) on culturally effective treatments. Black individuals are underrepresented in PCOR/CER on SUD treatments. Geographic variations in the incidence of SUD among Black individuals exacerbate this underrepresentation. 

Proposed Solution: This project combines the strengths of three organizations to create a patient advisory group (PAG) with representation from Black individuals residing in Appalachia who have lived experience with SUD in PCOR/CER on telehealth solutions for SUD.

Objectives: 

  1. Convene a PAG comprising Black individuals who have lived experience with SUD; advise the PAG on developing initial operating guidelines and a governance model 
  2. Based on a PAG-researcher convening, make recommendations for establishing an ongoing relationship between the groups
  3. Iterate the PAG structure based on insights learned from the convening so it may continue to advise researchers
  4. Motivate researchers to engage with the PAG in pursuing PCOR/CER that advances effective telehealth SUD treatment

Activities: Phase 1 of the project will be semistructured qualitative interviews with at least 20 Black individuals who have lived experience with SUD. In phase 2, the project team will convene patients to form a PAG and a group of researchers. Phase 3 will be a PAG-researcher meeting. Project team members will produce a Guidance Report and webinar that describes the process, findings and recommendations to expand engagement in PCOR/CER.

Projected Outcomes and Outputs:

Short term (during the project period), the project aims to increase the amount of information that exists on the views of patients on telehealth treatment PCOR/CER and how PCOR/CER could be improved by more involvement from individuals with lived experience. It also aims to increase patients’ confidence and skillset around engaging with researchers and researchers’ favorability toward including patients in future PCOR/CER and increase their intention to do so with a feasible pathway for engagement. 

Medium term (0-2 years post-project period), the project aims to increase the number of PCOR/CER projects that engage with the PAG and scale the PAG to other regions. 

Long term (3+ years post-project period), the project expects to create standardized, sustainable ways to engage select patient populations in PCOR/CER and improve the outcomes for underrepresented individuals who seek SUD treatment.

Patient and Stakeholder Engagement Plan: In the first phase, the qualitative interviews will involve use of a trusted facilitator that has experience working with the target population. In the second phase, the project team will support the PAG members with resources and tools to enable their progress but will encourage the members themselves to decide on their approach. In the final phase, the project team will support the PAG as it represents its goals and process in a convening with researchers. It will also assist the PAG in drafting recommendations and a final report, seeking PAG members’ feedback before finalizing. The project will leverage a set of subject matter specialists.

Project Collaborators: The Network for Excellence in Health Innovation’s staff has a solid grasp of PCOR/CER methodologies. Its broad membership base also gives it a perspective on how PCOR/CER is used and accessed. Community Catalyst has extensive experience working with community-based organizations and a deep understanding of SUD from both working with individuals with lived experience and analyzing policies and practices nationwide. Black Faces Black Voices has significant experience working with Black individuals with SUD.

Project Information

Wendy Warring, BA, JD
Claire B. Cruse, BS, BA, MPH
The Network for Excellence in Health Innovation (NEHI)
$250,000

Key Dates

May 2025
2023

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Last updated: April 3, 2024