Embracing Anti-racism in Addiction Treatment, Research and Policy: Engaging Black People with Lived Experience of SUDs

Background: Individuals who have substance use disorders (SUDs), as well as clinicians and researchers, are now calling for anti-racist approaches to counter the sustained impacts of structural, interpersonal, and internalized racism in healthcare as a whole and the treatment of SUDs in particular. Robust conversations have begun to take place in progressive organizations that recognize the need to find new pathways to health equity. However, the voices of Black people with lived experience of SUDs as patients and/or family members are largely absent from these conversations.

Proposed Solution to the Problem: For the past six months, the Grayken Center for Addiction at Boston Medical Center (BMC) has met at least once weekly with members of its Working Group on Anti-racist Approaches to Addiction Treatment (AAAT Working Group), an interdisciplinary, 22-member group of national experts in addiction medicine, local treatment providers, addiction researchers, graduate-level trainees, and health system leaders, more than half of whom are people of color and several of whom have lived SUD experience. The project team has also met with leaders from the Black community in Boston to solicit their thoughts on racism in addiction treatment. In December 2021, the project team conducted the first of a series of five formal focus groups of Black people with lived SUD experience, who were recruited by posting flyers in predominantly Black neighborhoods in Boston, and by word of mouth. The focus group guide was designed with input from the population of focus and is being revised over time to shape the conversation in a manner to generate six to eight Major Topic Areas (MTAs) for future patient-centered outcomes research (PCOR) and comparative clinical effectiveness research (CER) to answer the question: How can treatment be made more appealing and effective for Black people who have SUDs?  

Objectives: The proposed project, Embracing Anti-racism in Addiction Treatment, Research and Policy: Engaging Black People with Lived Experience of SUDs, will educate, empower, and engage a new Council of Experts on Patient Experience (CEPE), drawn from the project team’s preparatory focus groups, to participate with selected members of the AAAT Working Group in day-long convenings to discuss each of the MTAs. 

Activities: The project team will initially train the 8-10 members of the CEPE to participate in community-engaged research using Connecting Community to Research, a toolkit developed by the project team’s BMC colleagues with PCORI funding, and hold monthly meetings, prepare them for the next convening, and debrief them from the previous convening. These trained patients will then join with clinicians, researchers, and social scientists in a series of convenings that are aimed at identifying what is known and what is not yet known about how to make SUD treatment more appealing and effective for Black people who have SUDs. A skilled facilitator will use the Delphi method and other group decision-making techniques to generate and prioritize three to five research questions for each MTA.

Projected Outcomes and Outputs: Results will be disseminated broadly in the form of the final report and recommendations, in scholarly publications and presentations, on social media, and through professional and personal networks. 

Short term outcomes:
Identify what is known about how to make clinical treatment more appealing and effective for Black people who have SUDs in the realms of personal, provider-level, and system-level factors, and identify important questions on this topic that have not yet been answered.

Medium-term outcomes (0-2 years post-project period):

1. Implement a community advisory board: The project team will engage with the focus group patients to create an advisory board that will shape and inform PCOR activities beyond the scope of this project.
2. Develop/incentivize a research agenda: The project team will support researchers to address key unanswered PCOR questions, recruiting stakeholders with lived experience of SUDs and providing expert consultation on study design and data analysis and a works-in-progress forum.
3. Launch a similar process to learn how to provide SUD treatment that is more appealing and effective for Latino/a patients and other patients who are Black, Indigenous, and people of color (BIPOC).

Long-term outcomes (3+ years post-project period): 
The project team will foster PCOR on the key unanswered questions identified through this and future convenings and become a recognized source of knowledge on how to provide more appealing and effective SUD care for BIPOC patients.

Patient and Stakeholder Engagement Plan: Black people with lived SUD experience will be recruited from focus groups to participate on the CEPE. They will be trained on Connecting Community to Research Toolkit and will be engaged as participants in the convenings and compensated for each convening in which they participate. The project team has already mobilized members of the AAAT Working Group who wholeheartedly endorse the proposed project and have agreed to participate in the convenings.

Project Collaborators: The project collaborators are the CEPE and the AAAT Working Group, with representation from Boston University (BU) School of Medicine, BU School of Social Work, and BU School of Public Health.