Empowering A New Kind Of Research Team To Study Substance Use

EntryPointCommunity Voices Health AffairsVol. 44, No. 9 Empowering A New Kind Of Research Team To Study Substance UseAkilah Wise AffiliationsAkilah Wise (email protected) is a senior editor at Health Affairs, in Washington, D. C. This is an open access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY-NC-ND 4. 0) license, which permits others to distribute this work provided the original work is properly cited, not altered, and not used for commercial purposes. See https: //creativecommons. org/licenses/by-nc-nd/4. 0/. PUBLISHED: September 2025Open Accesshttps: //doi. org/10. 1377/hlthaff. 2025. 00960AboutSectionsView PDFPermissions ShareShare onFacebookXLinked InRedditEmail ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsDownload Exhibits Abstract Hoping to improve substance use research, a new group has committed to providing key training and access to people with lived and living experience using drugs. TOPICSSubstance useResearchersHarm reductionPharmaceuticalsSubstance use disorderPaymentSexualityHIV/AIDSAccess to careTreatmentOpioid use disorderBuilding trust: As cochair of the People with Lived (-ing) Experience as Researchers Board, Caty Simon has sought to build trust among participants as they've begun working together to develop new research projects and training programs. Photograph by Christopher Capozziello In 2019, Timothy Santamour cofounded the Florida Harm Reduction Collective, a group of activists, community leaders, and public health experts committed to reducing or eliminating the harm associated with drug use. Harm reduction is an evidence-based public health approach that is a stark break from more punitive or abstinence-focused interventions. 1, 2 Forming the collective was just the latest step in nearly three decades of work that Santamour has dedicated to syringe access programs and advocacy for gay men who inject drugs. Shortly after the collective's launch, a university-affiliated syringe access program invited Santamour to join its research team. Among his early contributions was reviewing the program's intake questions, which would later be used for research. He immediately saw problems with how the questions were phrased and presented. "Nobody's going to answer that question honestly, " he thought more than once, recognizing that the language used threatened to undermine the data quality and cause harm to the very people whom the program intended to help. "You're retraumatizing people with those questions, " Santamour told the lead researcher. And so, together, they reworked the questions to ensure that the language was not stigmatizing to people in the community. Santamour's experience highlights just how much potential there lies in reshaping the composition of research teams, especially those focused on studying substance use. The traditional research process is usually driven by university-trained and university-affiliated researchers who define the research question, design the study, collect and analyze data, interpret findings, and publish the results in academic journals. Despite their best intentions, such researchers typically do not have direct personal experience living with substance use. Researchers will sometimes include people with lived and living experience (PWLLE) of substance use, but more often than not, it is too late for their input to have an impact. These half-hearted collaborations can make PWLLE advisers feel tokenized or exploited. Meanwhile, the data that the resulting research generates are likely to be of poor quality and inaccessible to most PWLLE. Fortunately, key collaborators are trying to shift that dynamic. To be sure, a few important individual researchers have worked closely over many years with people who use drugs. But until recently, Santamour said, the field has not had an organized body of people to design and conduct substance use research that centers PWLLE as researchers. That changed, however, in 2023, with the creation of the People with Lived (-ing) Experience as Researchers (PLER) Board, a group of leaders dedicated to conducting nonstigmatizing research with people who use substances. Amanda Latimore conceptualized the board in 2021 before formally establishing it in 2023 with initial funding support from the American Institutes for Research (AIR) and the National Harm Reduction Coalition. At the time, Latimore had been leading AIR's Center for Addiction Research and Effective Solutions. She would later leave AIR early in the summer of 2025, after the organization undertook a reduction in force in the face of financial uncertainty driven by the current presidential administration's multifaceted targeting of research institutions nationwide. Still, Latimore has continued with the PLER Board, a group that she said is "doing this work differently. " The PLER Board's approach to research on substance use differs from the traditional model because it envisions PWLLE as leaders of research teams, seeing projects from start to finish to produce accurate, policy-relevant research on substance use disorders. "In my work, some of my best research ideas weren't even mine. They came from people who were saving lives every day, doing the work every day, " Latimore said. Historically, these people haven't had the access and technical skills to lead a major research project. That's a problem, because those are the very same people whose experiences and insights are essential to generating evidence that is truly relevant and responsive to the immediate needs of people who use drugs. The PLER Board aims to close this gap by empowering PWLLE to conduct their own research projects. It does this by providing board members, who come from harm reduction organizations, drug user unions, and allied cultural communities, with instrumental and technical support. Creating The Board, Building Trust Latimore holds appointments at the Johns Hopkins Bloomberg School of Public Health, in Baltimore, Maryland, and Georgetown University, in Washington, D. C. , and she formerly worked for Behavioral Health System Baltimore, Inc. , and for the Health Department in Baltimore City. That is where she saw firsthand the impact of policy decisions on PWLLE. "Researchers rely so much on the trust built by people with living experience in order to do the work well. I would never have been able to get this board up and running, had it not been for the buy-in of a couple of people who already had the trust of the community, " Latimore said. That included the two women she invited to cochair the board: Joy Rucker and Caty Simon. Rucker began her work in HIV prevention and substance abuse treatment during the early 1980s in Massachusetts and spent twenty years developing overdose prevention and syringe exchange programs. She is the cofounder of the National Black Harm Reduction Network. Simon is a leadership team member of the National Survivors Union, as well as a research assistant at the Yale School of Medicine, in New Haven, Connecticut, and founder of Whose Corner Is It Anyway? , a mutual aid group for people who engage in sex work and substance use and who experience housing insecurity. Rucker and Simon are two of the PLER Board's total twelve members—typically executive directors and senior leaders—who meet virtually every month. PLER Board members operate in their communities at the nexus of providing services, conducting research, and advocating for the rights and perspectives of PWLLE. In addition to the monthly core meetings, smaller work groups meet more frequently to advance activities related to business development, communications, and infrastructure. The diversity of the PLER Board is intentional. Members represent specific communities affected by substance use disorders and the opioid crisis in the US, including Black, Indigenous, and Asian American and Pacific Islander communities. "There's this huge belief that our communities don't really suffer from mental health or…substance use disorder—any kind of addiction, " said Marielle Reataza, a physician and executive director of the National Asian Pacific American Families Allied for Substance Awareness and Harm Reduction, in Alhambra, California. Although national data show that Asian American and Pacific Islander communities have lower rates of substance use compared with the general population, Reataza said that substance use disorders have a significant impact on their communities, where treatment is impeded by structural challenges related to immigration as well as stigma. Board members also represent each region in the US and territories, including the Midwest and Mountain West, Mid-Atlantic, Southwest, and Puerto Rico. "We represent regions, organizations, and communities—not ourselves, " said Santamour, who represents Florida and the US Southeast. Trust and respect for each member's background, skill set, and priorities are integral to the board's structure. Shared Measures Of Success In 2023, the board took on its first major project, known as Measurements for Accountability to All People in Policy Solutions. 3 With initial support from the AIR Opportunity Fund, Measurements for Accountability to All People in Policy Solutions is a state-based, three-phase project designed and led by board members to help states strategize on how to best use public funds, such as opioid settlement funds and cannabis tax revenue. The project's goal is to create "shared measures of success" for addressing the overdose crisis through restorative justice and to share them with key parties, including state legislators, community organizations, and researchers. The first phase consisted of data collection: interviews, listening sessions, and focus groups to assess community needs, identify promising innovations, and consider potential investments. Measurements for Accountability to All People in Policy Solutions is currently focused on two states, Maryland and Oregon, with plans to bring others into the fold. They started in Maryland, collecting and analyzing data beginning in July 2024, with listening sessions, a literature review, and thirty interviews with subject matter experts. Now in the second phase of the board's Maryland engagement, members are planning on convening a summit of partners and participants so far. The goal is to evaluate the collected data together through a collaborative process they call "co-interpretation. " Along the way, they'll discuss potential measures of success and highlight continued gaps in the data collection. The board's Oregon engagement started in October 2024, and data collection is still under way. Twenty-five subject matter expert interviews have already been conducted. The project has continued to move forward on its work and investments, even though the current political environment has created uncertainty around timelines for key goals. Collaborations such as these can be hard to pull off. In each state, Measurements for Accountability to All People in Policy Solutions members work with the governor's office and the state agency responsible for substance use disorders. The project has continued to move forward on its work and investments, even though the current political environment has created uncertainty around timelines for key goals. Now states are preparing for pending funding cuts set in motion by the budget reconciliation bill signed by President Donald Trump in early July 2025, said Adam Troy, a technical assistance consultant with AIR and for the Measurements for Accountability to All People in Policy Solutions project. Troy created a six-part training course for board members to ensure that they had the tools to conduct this qualitative research as rigorously as possible. The goal, Troy explained, was for board members to develop research from conceptualization to publication and presentation. "They're the experts, and they're the ones doing the research, " he said. For some board members, the project was their first opportunity to strengthen their formal research skills and get training in research ethics—something typically reserved for those affiliated with a research institution. Troy's training gave members the foundation they needed to create the study design, formulate the research questions, conduct the interviews, develop the codes and codebook, and interpret the findings. The project's third phase will consist of synthesizing outcomes from the co-interpretation convenings and developing public-facing materials and reports. Simon believes that this approach has already paid off. Compared with previous studies in the field, she said, "we got much richer data. " Measurements for Accountability to All People in Policy Solutions team members eventually want to scale the project and replicate it in other states that are considering how to spend their opioid settlement funds, Troy said. Stigma And Institutional Access One example of how PLER Board members improved the research over what might have been conducted by a more traditional academic team, Rucker said, was that they actually "cut down on the unnecessary questions. " She said that researchers who lack the lived experience often ask questions that are not relevant to people's lived experiences. That can be confusing to interviewees, seeding skepticism and resistance. "It ends up creating this huge question of, 'Where is the information going? '" she said. In the case of the PLER Board, the researchers made it clear that their fundamental interest was in understanding the interviewees' interests, so they only asked questions that advanced that goal. By taking this approach, board members were able to overcome one of the big barriers embedded in more traditional academic research: the very rational resistance among many PWLLE to opening up to researchers. As Simon explained, PWLLE are "taught certain ways to respond to authority. You know, we have been living this way all our lives—where we know a certain script. " That "script" stems from marginalization, in which people who use drugs are often operating in "survival mode" to avoid retaliation and stigmatization. PWLLE being able to "speak as we speak among each other" is what is missing from addiction science, Simon said. "I have a lifetime of telling people who are from better class backgrounds than me and asking about my drug use exactly what I think that they want to hear. So, as soon as someone tells me that they're one of me…the entire tone of the interview or the focus group changes, " she explained. People with lived experience often pick up on things that might otherwise be missed by people who don't use drugs, Santamour said. The Measurements for Accountability to All People in Policy Solutions project was his first experience with coding qualitative data, and he recalled taking the proactive step to create a new code for "stigma as a barrier to care. " "A lot of folks will code transportation as a barrier to service, " he said. "Stigma is a barrier as well, and it's important for researchers to dig deep when conceptualizing it. " "When I was using problematically, I couldn't go into the gay AIDS service organization and get information because that would tag me in the community as an injection drug user, " he continued. "And I couldn't go into the needle exchange program and identify as a gay man because that would subject me to homophobic comments and such. So, there is a barrier there that exists, and it's…more nuanced than you might assume. " Sometimes these stigmas can be reinforced by traditional research practices, especially those related to collaborative partnerships between researchers and community members. For example, "there's a lot of stigma associated with paying people" to participate in research, Latimore said. "There's a long history, " she continued, of researcher "bias" grounded in the belief that the money "is going to be used for drugs. " So, board members have worked to counteract those assumptions, emphasizing that appropriate compensation and forms of payment are critical when working with PWLLE as researchers. "In fact, the more marginalized you are, the more expensive it is to be involved in this research, " Latimore said. During the PLER Board's early days, AIR and the National Harm Reduction Coalition invested in providing honoraria and a 1, 000 stipend per quarter for board members' participation. Notably, they did not give gift cards as compensation for members, which Simon said, can contribute to stigma by implying that recipients cannot be trusted to spend direct cash payments appropriately. She said that gift cards devalue the labor of people who use drugs because they have to trade them at a lower value to get cash for them, making them an inconvenient form of payment for people trying to survive. Simon recalls a member of her organization expressing frustration, saying that, "I can't get a gallon of milk for my kid at 10 at night with a Dunkin Donuts gift card. " Traditionally, direct payment hasn't been deemed necessary for collaborators who might be employed elsewhere or have the flexibility to contribute their time. And for institutionally affiliated researchers, projects such as these are often a "stepping stone" along their career path, Troy said, making compensation unnecessary. But those same academic structures and research processes are exclusionary, Simon said. "A lot of the times we can't even read the paper that was produced from the extraction of knowledge from our members, because it's behind a paywall, " she explained. "I've experienced this power dynamic—this differential between those people who are doing the work and the people who approach those people who are doing the work…with better ties financially or access, " Troy said. Before his role at AIR, Troy worked at an HIV prevention organization in central Florida, where they had county approval to start a syringe service program but no funding. For years, they tried to garner funding from a pharmaceutical company, "but no luck, " Troy said. "We knew that we needed a university as partners to access that money. We needed that partnership, " he explained. When his group finally secured a university partnership, he said, doors opened, and the company agreed to meet with them. "That's just sort of the power differential that that we observed, " he said. Moving Forward The PLER Board's long-term goal was always to be an independent entity and to be sustainable without the support of AIR and the National Harm Reduction Coalition. AIR's reductions in force and funding earlier this summer have now made that vision a reality, whether the board was ready for it or not, Latimore and Troy said. It has been a challenging seven months or so. Board members have seen the foundational goal of their work—advancing equity—directly undermined by the Trump administration and the Republican-controlled Congress, which have rolled back safety-net funding and shuttered numerous programs committed to inclusion. Still, some board members remain resolute that their approach will endure long after any immediate cuts are made. Some board members remain resolute that their approach will endure long after any immediate cuts are made. Troy emphasized that the PLER Board's work is ongoing. He envisions the board's future as a central resource for PWLLE researchers and their potential partners. Since leaving AIR, Latimore has remained committed to "building demand for community-led research. " To that end, she launched her own consulting firm, Shoulders of Giants Consulting, LLC, which she said provides research and technical assistance to advance community and individual well-being through "amplifying the wisdom and leadership within communities. " Rucker looks back on the progress made in recent decades, reflecting on how the notion of harm reduction and engaging with PWLLE as researchers had gained traction within federal entities such as the Substance Abuse and Mental Health Services Administration (SAMHSA). 4 "I remember when we could not be in the same room with the Centers for Disease Control and Prevention or SAMHSA and say 'harm reduction, '" she said. Her experience has provided her with perspective and tenacity: "I think most people are waiting to see when the dust settles…who among our allies is still left standing. " When asked if she plans to be left standing, Rucker said, "I'm always standing. "NOTES1 Marlatt GA, Witkiewitz K. Update on harm-reduction policy and intervention research. Annu Rev Clin Psychol. 2010;6: 591–606. Crossref, Medline, Google Scholar 2 Harm reduction must replace punitive drug policies (editorial). Lancet Glob Health. 2025;13 (1): e1. Crossref, Medline, Google Scholar 3 American Institutes for Research. Measurements for Accountability to All People in Policy Solutions (MAAPPS) Internet. Arlington (VA): AIR; c 2025 cited 2025 Jul 28. Available from: https: //www. air. org/project/measurements-accountability-all-people-policy-solutions-maapps Google Scholar 4 Substance Abuse and Mental Health Services Administration. SAMHSA overdose prevention and response toolkit Internet. Rockville (MD): SAMHSA; 2025 cited 2025 Aug 12. (Publication No. PEP23-03-00-001). Available from: https: //library. samhsa. gov/sites/default/files/overdose-prevention-response-kit-pep23-03-00-001. pdf Google Scholar Loading Comments. . . Please enable JavaScript to view the comments powered by Disqus. DetailsExhibitsReferencesRelated Article Metrics History Published online 2 September 2025 InformationThis open access article is distributed in accordance with the terms of the Creative Commons Attribution (CC BY-NC-ND 4. 0) license. 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