New research highlights how paid leadership opportunities, mentorship, and community partnerships can support Patient Partners in turning diabetes research into action.

Patient Partners are often invited to share their experiences in health research. Far less often are they given the resources, authority, and opportunities to lead what happens next.

A new evaluation of Diabetes Action Canada’s Research-to-Action Fellowship, published in the Journal of Patient Experience, examines what happens when that approach changes, and what it takes to support Patient Partners in turning research into action.

What the Evaluation Found About Patient Leadership to lead

Launched in 2024, the Research-to-Action (RTA) Fellowship provides Patient Partners with paid leadership opportunities, practical training, mentorship, and community partnerships to develop resources that make diabetes research more accessible and useful.

The evaluation examined the Fellowship’s inaugural 2024–2025 cohort, gathering feedback from 15 participants, including seven Fellows, six community partner representatives, and two DAC program implementers.

Four key findings emerged:

• Practical skills: Fellows reported gains in their knowledge mobilization skills, including planning projects and developing accessible research resources.
• Meaningful leadership: Paid roles created opportunities for Patient Partners to lead projects and make decisions beyond traditional advisory roles.
• Community collaboration: Working in pairs and alongside community organizations supported shared learning and projects informed by community priorities.
• Supportive relationships: Mentorship, trust, clear communication, and flexibility helped Fellows navigate challenges and contribute meaningfully.

By the end of the program, Fellows reported that their experience had met or exceeded their expectations.

Investing in Meaningful Patient Engagement

The Fellowship was designed around a simple principle: lived experience is expertise, and Patient Partners should have opportunities to shape how research is shared and used.

Rather than asking Fellows to review resources developed by others, the program supports them in co-designing knowledge products, including guides, videos, and other tools informed by research and community needs.

The evaluation highlights how compensation, training, mentorship, and strong relationships contribute to creating the conditions for meaningful leadership.

“Patient Partners already bring expertise, ideas, and leadership to research. Our responsibility is to invest in the conditions that allow them to put those strengths into action, including fair compensation, meaningful decision-making opportunities, mentorship, and relationships built on trust. What excites me about this evaluation is that we’re not just hearing what Fellows gained from the experience. We’re learning what research organizations need to do differently to support Patient Partner leadership, and how we can keep getting better at it.”

Linxi Mytkolli, Director of Patient Engagement and Knowledge Mobilization, Diabetes Action Canada

Building on the Findings to Strengthen the Fellowship

While the evaluation offers encouraging early findings, it also identifies opportunities to strengthen mentorship, program design, and longer-term engagement. Future research will be needed to understand how participation influences continued leadership, community partnerships, and the use of research beyond the Fellowship.

DAC is already building on lessons from earlier cohorts, including through paid alumni Program Assistant roles that create opportunities for former Fellows to mentor others and contribute to program delivery.

The findings reinforce an important message for research networks: meaningful patient engagement requires more than inviting people to participate. It requires sustained investment in their leadership and the structures that make it possible.

📖 Read the full paper: Evaluation of the Diabetes Action Canada Research-To-Action Fellowship Program for Patient Partners, published in the Journal of Patient Experience.