Challenge

Public engagement in research has shifted from optional to essential. More than 60% of grant opportunities now require some form of community engagement. Yet many institutions lack models for effectively inviting patients and community members into the research development process.

Solution

The PaRTICIpate Project directly engaged people with diabetes in shaping the research pipeline by applying the principles of community-based participatory research.

Key strategies included:

• Hosting community-based meetings near patients to maximize accessibility.

• Training community members in research question development.

• Gathering stakeholder feedback on diabetes management challenges and opportunities.

• Conducting a retreat where patients and researchers co-wrote research questions.

This design ensured that patient voices were central, not peripheral, in setting future research priorities.

Highlights:

• Produced 17 patient-driven research questions, which informed two published scoping reviews. Reviews showed:

• The need for more studies focussed on  implementation science, health literacy, and communication.

• Patients could co-write research questions on novel, unexplored areas in diabetes self-management.

• Seeded new studies, including:

• Feasibility of weight management programs in community pharmacies.

• Patient perspectives on patient-driven weight management programs.

• Development and evaluation of a tool to assess patient diabetes self-management knowledge and behaviors.

Impact

The project embedded patients as partners in research question development. The project shaped future diabetes research and advanced a replicable model for patient-centered engagement. Its legacy shows how co-creation can lead to more relevant, innovative, and impactful research agendas.