Qualitative Methods as Participatory Infrastructure: Centering Lived Experience in U.S. Drug Supply Research

Kurzzusammenfassung in leicht verständlicher Sprache

Drug overdoses are a significant problem because many risks and underlying causes are not yet adequately understood.

In this study, we wanted to find out how research on overdoses can be improved by including people with their own experience.

To achieve this, we worked closely with people who have personal experience with drug use during the research process and incorporated their knowledge.

We found that this collaboration revealed important insights into risks, burdens, and changes in the drug market.

These results can help to make research and measures for health protection and harm reduction more accurate and effective.

Abstract

Hintergrund und Fragestellung
Qualitative methods in addiction research are often framed as tools for describing lived experience or contextualizing quantitative findings. This positioning underestimates their role in shaping how drug supply systems are understood and reflects the limits of researcher-defined frameworks. I argue that qualitative methods function as participatory infrastructure—an interface through which lived experience becomes legible to research and public health systems.

Methoden
This presentation draws on qualitative studies of overdose response and drug supply dynamics among people who use drugs in the United States, using in-depth interviews and reflexive thematic analysis. These studies examine experiential knowledge, behavioral adaptation, and real-world decision-making in rapidly evolving risk environments.

Ergebnisse
Findings illustrate three system-level functions of qualitative methods. First, they enable early signal detection by identifying shifts in drug potency, volatility, and user practices before these appear in surveillance data. Second, they expand the scope of inquiry by surfacing overlooked phenomena, including the burden of overdose reversal, the moral labor of care, and the embodied expertise of lay responders. Third, they help revise incomplete system assumptions. For example, overdose response is typically modeled as a professional, protocolized activity, yet qualitative data reveal a continuous, community-based practice requiring adaptive expertise. Similarly, substances such as xylazine are framed solely as harmful adulterants, but qualitative accounts show how people adapt to these risks in ways that are not captured in conventional data systems.

Diskussion und Schlussfolgerung
Qualitative methods do not simply add nuance—they shape what systems can detect and how they interpret it. Without qualitative engagement, research systems risk organizing around incomplete models of reality, including mischaracterizations of expertise, risk, and response. Recognizing the limits of existing perspectives and engaging with lived experience can support more accurate, responsive, and effective public health and harm reduction strategies.

Interessenskonflikte sowie Erklärung zur Finanzierung
Ich bzw. die Koautorinnen und Koautoren erklären, dass während der letzten 3 Jahre keine wirtschaftlichen Vorteile oder persönlichen Verbindungen bestanden, die die Arbeit zum eingereichten Abstract beeinflusst haben könnten.