Building meaningful relationships through co-design: reflections from a participatory multi-year research partnership to create MedManageSCI.

Abstract

Background: Participatory approaches to research, including co-design, are essential to enhancing healthcare quality and safety and for minimizing the research-to-practice gap. Our team co-designed a medication self-management toolkit, MedManageSCI, to empower adults with spinal cord injury/dysfunction (SCI/D) to better integrate medications into their daily lives.

Objective: We reflect on the lessons learned through the co-development of MedManageSCI and provide practical considerations for future co-design and implementation research.

Methods: A participatory multi-methods study was conducted to co-develop, implement, and evaluate MedManageSCI. A working group comprised of adults with SCI/D, caregivers, and healthcare providers guided all aspects of this research, participating in a total of 10 meetings over the three-year project. In the final meeting, a reflective discussion was facilitated to identify key insights, practical strategies, and future considerations for engaging a diverse group of individuals in a multi-year, participatory research process. The audio-recording and notes from this session were analyzed independently and with the working group.

Results: The working group consisted of nine adults with SCI/D, nine healthcare providers (e.g., physicians, nurses, pharmacists, physical therapists, occupational therapists), and one caregiver from across Canada. We identified an overarching theme, development of meaningful relationships, which was enabled through the following three key insights: co-creating a vision and having a collaborative culture, ensuring structured and intentional engagement, and closing the loop through authentic transparency. Across the overarching theme and insights, we discuss practical strategies and future considerations to support meaningful and sustained engagement in participatory research.

Conclusions: By sharing our processes and key learnings, our goal is to inform and strengthen future co-design and implementation research by promoting shared and inclusive leadership, ensuring meaningful engagement, and fostering psychologically safe environments.