20 Feb Deepening Patient Engagement in Research
A Summary from the Centre for Lung Health Patient Engagement Training
In January, we brought together patient partners, investigators, and trainees for our patient engagement training. The topic was one close to our hearts: what does deeper collaboration look like, and how do we move beyond simply checking a box?
We hosted a panel discussion with four voices from across the research ecosystem: Tony Lanier (Patient Partner, Community Partner Committee), Dr. Stirling Bryan (Michael Smith Health Research BC), Prachi Khanna (UBC and C2E2), and Dr. Kendra Nelson Ferguson (Western University). The conversation was honest, practical, and full of real-world experience. Below, we have pulled together our panelists’ top tips, whether you are just starting out or looking to strengthen the partnerships you already have.
Start with a shared foundation
Make sure everyone understands what the project is, why it matters, and what each person’s role will be. When a team shares a common language and clear goals, everything flows more smoothly.
• Developing a terms of reference before a project begins is a practical way to manage expectations on both sides.
• Training is essential for both patient partners and researchers, and it is the foundation that everything else is built on.
Communicate openly and respectfully, even when it is hard
Communication breakdowns are one of the most common challenges in patient engagement. Close the feedback loop by sharing what changed as a result of input, and what could not change and why. Meaningful engagement is not one size fits all, so have a conversation early about communication preferences and offer different ways to give feedback, such as written, verbal, or anonymous options, so everyone feels comfortable contributing.
Reflect and keep improving
Engagement can and should be evaluated over time. Keep asking whose knowledge is being valued and who is still missing from the table. Use what you learn to do it better next time.
• Patient and Public Engagement Evaluation Tool (McMaster): https://ppe.mcmaster.ca/resources/public-and-patient-engagement-evaluation-tool/
• Patient Engagement in Research Scale (PEIRS): https://www.arthritisresearch.ca/peirs/
Tips for patient partners
Patient partners bring invaluable lived experience to the research team and should feel empowered to share it. Patient partners can expect, and are well within their rights to ask for:
• Mutual respect.
• A clear explanation of the project, what it is trying to do, and why it matters.
• Orientation and project-specific training, as needed.
• Clarity on their role upfront, including level of engagement, time commitment, and expectations.
• Regular updates on where the project is at, even during quieter periods, and clear communication about how input was used. What this looks like should be agreed upon at the start of the project.
Tips for researchers
• Get patient partners involved early. Patient partners should be part of the conversation before solutions are defined. This means including them at the grant writing stage, during study design, and when setting priorities. Starting small is fine. What matters is that engagement is built in from the beginning, not added on at the end.
• Bring multiple voices to the table. It is best practice to engage more than one patient partner. Regularly ask: who is missing from this conversation? The people hardest to reach are often the ones most affected by the research.
• Diversity Tapestry (BC Support Unit): https://diversity-tapestry.com/
• Intersectionality in Research Guide: https://knowledgetranslation.net/wp-content/uploads/Intersectionality_KT_Guide_20200317_FD.pdf
• Build strong relationships. Show partners how their feedback shaped the work. Spread communication responsibilities across the team so that relationships are maintained when people move on.
• Provide fair and timely compensation.
• Patient and Public Partner Financial Compensation Policy and Protocol (SPOR Evidence Alliance): https://sporevidencealliance.ca/wp-content/uploads/2025/04/SPOREA_Patient-and-Public-Appreciation-Policy-FINAL.pdf
• Flexibility in how and when they contribute, including options that fit their schedule.
Interested in learning more or have feedback for future trainings? Email centreforlunghealth@vch.ca.