Can-SOLVE CKD Patient engagement presentation

The Canadian Donation and Transplantation Research Program in cooperation with the Organ Donation and Transplantation Collaborative and the Canadian Society of Transplantation, is happy to announce the third edition of the Patient, Family and Donor Research Forum dedicated to donation and transplantation research partners across Canada was held on June 22-23, 2022.

The Forum’s objectives were:

  1. To advance collaboration between investigators and patient, family, donor (PFD) partners in donation and transplantation research;
  2. To educate investigators and PFD partners on emerging best practices regarding the inclusion of PFDs in research and knowledge translation activities; 
  3. To promote researchers to present their work that has evolved with a PFD perspective.


During the Patients, Families & Donors in Knowledge Translation portion of the forum, Can-SOLVE CKD Project Manager Alicia Murdoch and Patient Partnerships and Training Manager Linnea Franson presented “Embedding patient engagement: the Can-SOLVE CKD experience.” 

The Do’s and Don’ts of Patient Engagement

Patient engagement is a relatively new way of conducting research in Canada and many researchers are probably still wondering how to do it well. Dr. Simon Hatcher and his team at the Ottawa Hospital developed a graphic novel style tip sheet, “Top 10 Recommendations for Researchers Working with Lived Experience Partners“.

The comic was created by people with lived experience of suicide at the REFLECT research forum which brought together patients and caregivers as well as suicide prevention researchers, trainees and policy-makers.

The top 10 recommendations are:

  1. Use common and clear language
  2. Allow for customization to patient partner’s needs. Be flexible.
  3. Be authentic in the approach to patient-oriented research. Avoid tokenism.
  4. Define roles. Invite and acknowledge everyone’s contributions.
  5. Balance power dynamics.
  6. Invite patient partners to do more than what they are recruited for.
  7. Compensate fairly and as a matter of course. Reimburse expenses.
  8. Build relationships through honesty and trust.
  9. Ensure governance through integrity and accountability.
  10. Establish and encourage continuous communication and feedback.

Budgeting for Patient Engagement

The George & Fay Yee Centre for Healthcare Innovation (CHI) in Winnipeg Manitoba has developed a budget builder tool to help investigators create budgets for patient engagement. This comprehensive document includes cost lines for travel, compensation, care-giving, audio-visual, facilitator, interpretators and more. The Excel file can be downloaded here and there is also a blog post about using this tool.