Accelerating Clinical Trials (ACT) Canada - Online Learning and Webinars.Trials and Tribulations of Patient Engagement in Clinical Trials (June 18, 2024): 57-min webinar (43-min presentation, 14-min Q&A) & 34-slide presentation.

• Summary: Members of ACT’s Patient Engagement Committee discuss patient and public engagement with a focus on partnerships in clinical trials. In these partnerships, lived experiences and expertise inform all stages of the research cycle. Taking a “myth busting” approach, members of the committee overview five misconceptions about patients and the public as partners in trials (e.g., Myth #1: Clinical trials are too complicated for patients to be meaningfully engaged as partners, Myth #2: Only patients need training, Myth #3: Patient engagement is just inviting people with lived experience to the table, Myth #4: Partners with lived experience cannot be Principal Investigators on CIHR grants, Myth #5: Patient partners are offended by compensation). A 1-page document listing the resources described in the webinar is available. 

NIH Pragmatic Trials Collaboratory (Living Textbook): Section 3 - Patient Engagement Throughout a Pragmatic Clinical Trial (Chapter: Patient Engagement): 1-page website.

• Summary: Overviews patient engagement across the pragmatic trial cycle: 1. Discovering (e.g., establishing relationships and developing a common vision), 2. Planning (e.g., understanding patient perspectives, developing study aims, interventions, patient-relevant outcomes, and navigating ethical issues), 3. Conducting (e.g., recruiting participants, advocacy, reducing recruitment and retention barriers), 4. Disseminating and sustaining (e.g., communicating and translating results, contextualizing quantitative data), 5. Maintaining relationships (e.g., promoting ongoing collaboration). Discusses various patient engagement methods (i.e., focus groups, community advisory boards, steering committee representation, and individual patient interviews).

Vanderhout S, et al. Patient and public involvement in pragmatic trials: online survey of corresponding authors of published trials. CMAJ Open. 2023 Sep 19;11(5):E826-E837. (12-page paper)

• Summary: Describes the prevalence and nature of patient and partner involvement in pragmatic trials. Concludes that patient and public involvement appears to be underreported in publications. Encourages consistent and standardized reporting to promote transparency about approaches, outcomes, challenges, and benefits related to to patient and partner involvement.

Strategy for Patient-Oriented Research (SPOR) - Patient Engagement Framework. Canadian Institutes of Health Research (Date modified: 2019-05-27): 19-page document (9-pages + 10-pages of appendices)

• Summary: The SPOR Patient Engagement Framework establishes concepts and principles related to patient engagement. Provides definitions for “Patient,” “Patient Engagement,” “Patient-Oriented Research,” and “SPOR Partner” and answers the question: “What can patients contribute and why it is needed?” Further, the framework provides guiding principles for patient engagement and highlights areas for engagement: 1. Patient engagement in governance and decision-making, 2. Capacity building for patient engagement, 3. Tools and resources. Includes three appendices related to: 1. Patient Engagement Framework Dashboard, 2. What does Success Look Like? 3. Considerations when Paying Patient Partners in Research.