Background: The drug overdose death rate is especially high for people returning to the community from incarceration, and even higher for women. This makes Black women, who represent 13% of the US population but 29% of the 231,000 women incarcerated, particularly vulnerable. Black women with lived experience of substance use disorders (SUD) and criminal-legal system involvement (CLSI) are often left out of patient-centered outcomes research (PCOR)/comparative clinical effectiveness research (CER) that could improve treatment, services, and outcomes. Many are reluctant to participate in research due to the harm to Black people from past scientific research.
Proposed Solution to the Problem: Community Catalyst (CC), in partnership with Black Faces Black Voices (BFBV), proposes to increase engagement of Black women with a history of SUD and CLSI in PCOR/CER, specifically to identify and promote relevant research topics and priority outcomes to focus on, propose ways to reduce barriers to engaging Black women in PCOR/CER, and advise PCOR/CER researchers. In the long term, this would result in PCOR/CER that drives better treatment outcomes, including survival post-incarceration of Black women with SUD. We will focus on patient engagement in five states—Georgia, Michigan, New York, Pennsylvania, and Texas—to identify recommendations to be used nationwide.
Objectives: Engage Black women with lived experience of SUD and CLSI in focus groups, PCOR/CER training sessions, shaping recommendations/engagement strategies shared in a report, and establishing a Consulting Corps to advise future PCOR/CER. The women will identify priority research topics and outcomes for research, propose ways to reduce barriers to engaging Black women in PCOR/CER, and advise researchers on new projects.
Activities: Educate Black women recovery leaders and peer recovery staffers about PCOR/CER so they can be PCOR/CER ambassadors; support the leaders to conduct focus groups of Black women with SUD and CLSI to inform a Recommendations Report on priority topics, outcomes, and engagement strategies for Black women with SUD and CLSI; and establish a Consulting Corps of Black women with SUD and CLSI to inform PCOR/CER projects.
- Partner with BFBV and peer recovery leaders in five states to build the capacity of Black women with lived experience of SUD and CLSI to understand, engage in, and influence PCOR/CER
- Educate 125 peer recovery staffers about PCOR/CER so they can be ambassadors for involvement of Black women in SUD recovery in PCOR/CER, and for use of PCOR/CER results by those in the recovery community to inform their own treatment and recovery decisions
- Engage Black women with SUD and CLSI through virtual focus groups (FGs) to identify barriers and solutions to engagement and priority topics and outcomes for PCOR/CER
- Publish PCOR/CER Recommendations Report developed from the FG findings, peer leaders with lived experience, and advice from SUD researcher and clinician advisors
- Establish a sustainable Consulting Corps comprised of up to eight Black women peer leaders, plus a few researchers and clinicians, to advise interested outcomes researchers
- Nationally announce the availability of the Consulting Corps and disseminate the Recommendations Report to influence future PCOR/CER and promote better treatment outcomes
Projected Outcomes and Outputs: Recommendations Report on engagement strategies, priority topics and outcomes derived from the participating Black women disseminated nationally to 100,000 stakeholders; Consulting Corps of eight Black women in recovery plus researcher and clinician liaisons prepared to advise PCOR/CER and introduced nationally; 125 peer recovery staffers are PCOR/CER ambassadors to recovery communities. In the long term, we expect PCOR/CER will include robust participation by and focus on Black women with lived experience of SUD and CLSI that drives comprehensive care models providing culturally effective treatment and better outcomes.
Short-term outcomes during the project period include:
- At least 125 peer recovery staffers with increased capacity to be meaningful partners in informing and participating in PCOR/CER, applying PCOR/CER results to their own treatment decisions, and being ambassadors to encourage other peers to participate and use the results
- PCOR/CER Recommendations Report (topics, priority outcomes, and strategies to reduce barriers) developed by Black women with lived experience of SUD and CLSI that is published and disseminated nationally to more than 100,000 stakeholders across the clinical, research, health policy, peer, and advocacy communities
- Lessons from our project’s outreach and education activities that can be used by other researchers to increase engagement of Black women with lived experience of SUD and CLSI in PCOR/CER, including our “Train the Trainer” curriculum
Medium-term outcomes (0-2 years post-project period) include:
The Consulting Corps will help researchers begin PCOR/CER focused on topics and treatment outcomes meaningful to Black women with lived experience of SUD and CLSI and reduce barriers to their engagement. CC and BFBV plan to work with the Consulting Corps and enlist help from other stakeholders in seeking non-PCORI funding to sustain the Consulting Corps.
Long-term outcomes (3+ years post-project period) include:
Robust participation by and focused on Black women with lived experience of SUD and CLSI that drives comprehensive care models providing culturally effective treatment and better outcomes in PCOR/CER
Patient and Stakeholder Engagement Plan: BFBV co-designed this project with CC and identified Black women recovery leaders to help shape it. The leaders will run focus groups of Black women with lived experience of SUD and CSLI. The Consulting Corps will be drawn from the recovery leaders and focus groups. CC will write the report based on the focus group findings and input from BFBV, the recovery leaders, the Consulting Corps, and research and clinical project advisors. All project participants will participate in dissemination.
Project Collaborators: BFBV and prominent researchers who committed to hire the Corps and use project findings. Dr. Miriam Komaromy, a leading clinician, researcher, and director of the Grayken Center on Addiction, is serving as special advisor.