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.

Patient as Investigators webinars

A 3-part series of webinars was delivered this Spring as part of the Capacity Building committee’s commitment to encourage patient to bring their research ideas to CNTN meetings. The 3 webinar topics included:

  1. What is research? – Offered an overview of what the term research means, the different types of studies and why patients should come up with research questions
  2. How to develop a research question – Offered a collection of tips to help patient partners better define their idea
  3. Presenting an idea – Offered tips on how to write an elevator pitch and what presenting the research idea at a CNTN meeting would require

These webinars are available for viewing below. If you are a patient partners with a research idea that you would like to propose to the network, please email it to Alicia at amurdoch@cansolveckd.ca.

Webinar #1 – What is research?

Webinar #2 – How to develop a research question

Webinar #3 – Presenting an idea