The Mobilization of People with Lived Experience and Their Networks in the Development of Digital Innovations in Substance Use Prevention and Treatment

This workshop will engage participants in exploring how people who use drugs (PWUD) and people with lived experience (PWLE) can be meaningfully involved in the development of digital innovations for substance use disorder prevention and treatment. Drawing on models of co-design, ladders of participation, and community-based research, the session will facilitate a collaborative discussion on the ethical, cultural, and geographical considerations by PWLE in digital health interventions.

Key themes will include the challenges and opportunities of incorporating PWLE perspectives in the design and testing of digital tools, with a particular focus on high levels of participation and empowerment. Participants will critically examine the roles of pharmaceutical and tech companies, as well as explore the motivations behind digital health initiatives, including profit-driven interests and their implications for community-led solutions.

Through case studies and real-world examples from diverse regions—such as Tehran,Vancouver, and New York—the workshop will highlight the importance of culturally sensitive, geographically specific approaches to digital health innovations. Ethical principles will be discussed, including how to ensure the mindful incorporation of PWLE while safeguarding their privacy and dignity.

We will also assess gaps in current protocols from organizations like the National Institute on Drug Abuse (NIDA) and National Institutes of Health (NIH) related to PWLE involvement. This includes reviewing study designs published through open science frameworks, and policies around compensation and involvement. Special attention will be given to the ethical and cultural challenges involved in ensuring that PWLE from diverse communities are meaningfully engaged, particularly in relation to product testing and implementation in grassroots organizations. This workshop will foster dialogue around best practices for inclusive digital health innovation, empowering PWLE to take an active role in shaping solutions that address their needs.