Abstract:
People deserve to have input on the decisions that affect them. Patient partnership is a way that patients can actively contribute to health care research. The Institute of Genetics (one of the Canadian Institutes of Health Research) has a systematic approach to supporting patient partnership. We share our lessons learned.

Summary of Conversations

The discussion centered on integrating patient partnership into healthcare research funding. It emphasized involving patients throughout the research life cycle, from initial idea to dissemination of findings, ensuring their input shapes priorities and methods. Diversity in patient partnership was highlighted as crucial, addressing the current over-representation of specific demographics. The conversation covered evaluating and iterating on patient partnership practices, adjusting funding opportunities based on patient input, and including patients on research teams and peer review panels, ensuring tangible impact on research funded.The importance of compensation for patient partners’ expertise and time was underscored, along with meeting partners where they are at.

Take Away Messages/ Current Status of Challenges

The following points came up during the discussion:

• Value of Lived Experience: Recognizing lived experience as a valuable form of expertise is not yet standard practice
• Ethical Considerations: There is a lack of clarity and established protocols regarding the ethical considerations and protection of patient partners, especially concerning privacy and power dynamics.
• Data Governance: Unanswered questions persist around data access and ownership for patient partners involved in research teams.
• Diversity Gaps: Significant diversity gaps exist among patient partners, limiting the representation of diverse backgrounds and experiences in research.
• Resource Needs: Academic researchers need resources and training to effectively engage vulnerable populations without tokenism.
• Transparency and Accountability: Patient partnership promotes greater transparency and accountability in scientific research by breaking down barriers for those outside academia.
• Evolving Field: Patient partnership is an evolving field with ongoing questions and challenges that need to be addressed proactively.
• Research Ethics Boards: The research ethics boards aren’t sure how patient partners fit into the whole research ecosystem

Recommendations/Next Steps

Here are some of the actions and strategies proposed:

• Utilize Existing Resources: Leverage existing training modules and resources on patient partnership to guide researchers in engaging with patient partners.
• Develop Ethical Guidelines: Create clear ethical guidelines and protocols to protect patient partners’ privacy, address power differentials, and ensure their well-being.
• Clarify Data Governance: Establish clear guidelines regarding data access, ownership, and governance for patient partners involved in research projects.
• Promote Diversity and Inclusion: Implement targeted recruitment strategies to increase diversity among patient partners, ensuring representation from various demographic backgrounds and lived experiences.
• Provide Compensation: Offer fair compensation to patient partners for their time and expertise, recognizing lived experience as a valuable form of knowledge.
• Offer Training and Support: Provide training and support to patient partners, empowering them to contribute meaningfully to research projects.
• Evaluate and Iterate: Continuously evaluate patient partnership practices, gather feedback, and iterate on approaches to improve effectiveness and impact.
• Foster Collaboration: Encourage collaboration and knowledge sharing among researchers, patient partners, and organizations to advance patient partnership in healthcare research.