Patient Engagement

What is Patient Engagement?

Simply put, patient engagement in research can be described as “research being carried out ‘with’ or ‘by’ [patients/ caregivers/ the public] rather than ‘to’, ‘about’ or ‘for’ them” (INVOLVE). Patients (i.e., those with lived experience of a health condition or their family/friends) become members of our research team.

The core concept behind patient engagement is that patients and caregivers are the ultimate end-users of the healthcare innovations, thus they should have a voice to help guide research to develop and evaluate these past/ongoing projects focused on or including patient engagement.

We are studying and supporting patient engagement in very early phase clinical trials and even bench-based laboratory research.

• Building a platform for meaningful patient partnership to accelerate “bench-to-bedside" translation of promising new therapies. PMID 35467515
• Partnering with patients to get better outcomes with chimeric antigen receptor T-cell therapy: towards engagement of patients in early phase trials. PMID 33072399
• Patient engagement in preclinical laboratory research: a scoping review. PMID 34280783
• Stakeholder engagement in economic evaluation: protocol for using the nominal group technique to elicit patient, healthcare provider, and health system stakeholder input in the development of an early economic evaluation model of chimeric antigen receptor T-cell therapy. PMID 34385243
• Making Patient Partnerships a Reality in Very Early Phase Clinical TriaLs. (MARVEL)
• Intraoperative pharmacologic opioid minimization strategies and patient-centred outcomes after surgery: a scoping review protocol. PMID 36858477
• Engaging patients in anesthesiology research: a rewarding frontier. PMID 36959493

Promoting Patient Engagement in Early Phase Clinical Trials: How Canadian Funding Agencies Can Help

Despite the value of patient engagement in improving the quality and relevance of research, there have been limited initiatives in Canada to involve patients in the earliest phases of clinical research and trials. To address this issue, our group developed a policy brief, in collaboration with two patient partners, on how Canadian funding agencies can help promote patient engagement in early phase clinical trials. In this brief we identify three key barriers to the implementation of patient engagement and provide recommendations on how to address them, as well as implantation considerations for the recommendations. The development of this policy brief was supported by a grant from the Ontario Strategies for Patient-Oriented Research Support Unit and critical feedback from Dr. Stephanie Michaud, CEO of BioCanRx.

The Blueprint Research Team’s Approach to Patient Engagement

How Can Patient Partners Be Engaged in Laboratory Research?

How Can Patient Partners Improve Clinical Trials and Enhance Research?

A Patient Partner's Perspective