Co-creating health system innovation with people who use drugs

A polycrisis of rising drug toxicity, pervasive houselessness, pandemic-related disruptions, coloniality and climate disasters is creating and exacerbating health inequities for People Who Use/Have Used Drugs (PWUD). This confluence of intersecting health, socio-political and environmental issues highlights the need for community-driven and adaptive innovation to address inequities in complex systems of care. To inform service innovations in an inner city social service hub in Edmonton, Alberta, we co-created a process that centres PWUD in health service planning and prioritization.

Using a community-based participatory research methodology informed by complexity theory, we conducted research with PWUD using SenseMaker micro-narratives and optional arts-based asset-mapping. Academic and peer researchers co-developed the study with input from the PWUD community and collected data at social service hubs and on outreach in the community. An iterative four-phase approach to research design, data collection and analysis guided the study: (i) Pre-data collection, (ii) Formal data collection, (iii) Readjusting, and (iv) Accountability.

This methodology paper describes how our four-phase framework guided the study and promoted a dynamic and accountable approach to centering PWUD in health system innovation. Over five months, 215 PWUD participants shared narratives and rich insights into their experiences with healthcare access, harm reduction, and community support. Our results emphasise the importance of taking time to orient to each other and the community, even as a diverse team with many preexisting relationships. An iterative data analysis process allowed for adjustments in real-time to guide research focus, ensuring equity-oriented engagement with structurally vulnerable groups. Accountability began with research design, was maintained throughout data collection by creating safety for participants, and then defined the final phase of the research where we created an accessible final report and are now working with the host nonprofit partner and community members on action-oriented responses to the narratives shared.

Meaningful engagement with PWUD in co-creating health system innovation requires relational and adaptive methodologies. The process-focused results of this study demonstrate how community-based participatory research informed by complexity theory can enable accountable healthcare innovation amidst a changing social and political landscape. We conclude with a set of recommendations for co-creation and other peer-centred approaches that prioritize PWUD voices in developing effective health services.