Engaging with People with Lived Experiences in OUD Modeling Research

Ways to Conduct Community-driven Research

By Bonnie Tse October 16, 2022

The article is written by Natasha Martin, CHERISH Research Affiliate and professor in the Department of Medicine at the University of California San Diego, and Bruce Schackman, CHERISH director and Saul P. Steinberg Distinguished Professor at Weill Cornell Medicine, with contributions from Caty Simon from Urban Survivors Union.

Rethink Our Approach to Modeling

In November 2021, modelers who attended the panel, “Engaging People with Lived Experience: Best Practices” co-hosted by the Center for Health Economics of Treatment Interventions for Substance Use Disorder, HCV, and HIV (CHERISH) and the University of California, San Diego, learned that models commonly make assumptions that do not reflect how people who use drugs live their lives. Oftentimes, models are also designed to address questions that are less relevant to people who use drugs. To prevent drug-related deaths, modelers and other researchers must collaborate with people with living experience to identify and implement effective solutions.

More recently we heard from experts working on the front lines of substance use research and advocacy about how to design and conduct research in collaboration with people with lived experience. In May 2022, Drug Policy Alliance, Urban Survivors Union, and the Network of Drug Researchers with Lived Experience co-hosted a four-part online series, “Beyond Participatory-Based Research,” to encourage researchers to push the boundaries of how research is typically conceptualized and think critically about the relationships we have with people who use drugs. The series also provided tools to authentically partner with people impacted by the drug war in every phase of the research process.

Applications of Community Driven Research to Drug Policy

“Applications of Community Driven Research to Drug Policy,” revealed how community-driven research can overcome power imbalances and structural issues in collaborations with academic researchers. This session was moderated by Jules Netherland, CHERISH Policy Advisory Board member and managing director for Research and Academic Engagement at Drug Policy Alliance, with Emily Einstein, Science and Policy Branch chief at NIDA presenting. Panelists included advocates from the Health in Justice Action Lab and the Network of Drug Researchers with Lived Experience and researchers from the University of North Carolina and the University of California, Los Angeles.

Innovative Examples in Community Driven Research

"Innovative Examples in Community Driven Research," highlighted researchers and organizations experienced in community-driven research and covered how best to partner with these organizations, develop the research capacity of all project participants, collectively identify community needs, develop research questions, and design and carry out research projects that directly benefit community needs by concurrently fostering public advocacy projects. The insights shared in this panel were also described in a recent commentary published in the International Journal of Drug Policy by Urban Survivors Union authors. This session was moderated by Aliza Cohen, research coordinator at Drug Policy Alliance. Panelists included Shaquita Borden, Mary Figgatt, Laura McTighe, and Louise Vincent.

Challenge the Academic Framework

These conversations during the past year have taught us as modelers to approach research not as an extraction of knowledge but as a collaborative process with people with living experience. Co-leading research projects with people with living experience can guide how the objective of the study is framed and help researchers break out of academic conceptual frames. Working with people affected by the drug war can also enhance the policy impact of research findings and identify critical real-world limitations.

Inspired by the “Beyond Participatory-Based Research” series, we provide the following suggestions to guide modelers on how to partner with people with lived experience:

1. Be thoughtful from the start.

Consider why you want to engage with people with lived experience. Examining your reasons early on will guide research decisions and allow people with lived experience to meaningfully drive the project.
Consider potential harms that may arise from your research. Will this work contribute to or decrease the harms and stigma that people who use substances experience?
Understand and minimize the risks to the individuals you will engage with when designing and conducting your research. For example, depending on where and how research is conducted, participation may increase the risks of negative encounters with the criminal-legal system. Consult with individuals with living experience on potential risks you may not be aware of.

2. Let go of assumptions.

People with lived experience are the experts. They have the life experience and the knowledge as organizers and service providers to be trusted contributors to your research.
Let your research questions be co-created by people with lived experience. Don’t ask questions based on your own experience only. Be open to other perspectives and experiences.
People who use drugs are not a homogeneous group. Connecting with a variety of organizations for your research can be a foundational step to including diverse voices and perspectives that reflect unique experiences, thoughts, and beliefs.

3. See research as a collaborative process.

Collaborate with people with lived experience across the entire research project. Too often, the community is narrowly engaged in order to collect data but is left out of the analysis or the decision-making process of the research. People with living experience can provide valuable insights starting from the initial framing and conceptualization to evaluation and interpretation of the data, and publication and dissemination.
Be flexible and inclusive of community priorities and needs. Individuals are more inclined to become involved if your project aligns with their priorities. Ask people with living experience what their community needs are and how your project may address or synergize with them.
Pay attention to word choice. Language adapts and evolves over time. Check that the language you use in substance use research does not further stigmatize the community and perpetuate discrimination.

4. Build effective partnerships.

Seek out organizations as partners. Organizations such as Drug Policy Alliance’s Department of Research and Academic Engagement can connect researchers to people with lived experience.
Compensate participants and think creatively about financial support. Compensation may look different for each participant or organization. Provide financial support in a format that is useful and minimizes administrative burdens.
Don’t rush the process. Building trust takes time and is the foundation of a good partnership. The most successful partnerships are built on clear communication and strong relationships of trust.