Table 2.

List of recommendations to operationalize each fundamental principle of the Canadian Institute of Health Research's Patient Engagement Framework in a Patient Advisory Council (PAC).

Fundamental patient engagement principles	Study findings	Recommendations for PACs
Inclusiveness	Diversity in PAC membership enhanced reach and access to diverse patient participants, increasing the generalizability of research findings	1. Broad and targeted outreach to invite members from multiple communities and backgrounds, as well as various lived experience of health conditions and partnered research. 2. Recruitment of enough members to account for possible future absenteeism and attrition owing to unique health and other circumstances of diverse members. 3. An open membership policy that is responsive to members’ and research programme's needs. 4. Regular evaluation to ensure PAC members their engagement is meaningful. 5. Consistent and comprehensive communication strategies and clear description of roles 6. Meeting times that are flexible and accommodate the physical and geographical circumstances of members. Additional ways to support missed meetings include an online shared documents folder, meeting recordings, etc. 7. Concerted efforts and dedicated meeting time for building relationships of trust that are essential to meaningful and effective research outputs (e.g., icebreakers, biography page, in‐person events when possible).
Support	PAC co‐chairs and members benefitted from direct support with specific tasks including agenda‐building and note‐taking; dedicated research skill‐building workshops, and compensation for their time. The enhanced support led to enhanced involvement in the research programme	1. Adequate budget and timelines to support the resources and time required for patient research partner collaboration and training. Include patient engagement budget in grant funding applications. 2. Collaboration with dedicated patient‐oriented research teams (e.g., Strategy for Patient‐Oriented Research Support Units) to support patient research partner engagement and collaboration. 3. Dedicated support to enable success of patient research partner co‐chairs and members including sharing of established templates for agenda‐setting and note‐taking, Terms of Reference and patient research partner compensation processes. 4. Direct peer‐to‐peer support between patient‐research partners and research personnel for understanding research processes, relationships and landscapes. 5. Specific research process training workshops for all patient research partners (e.g., workshops on conducting interviews and thematic data analysis) without patient research partner obligation to commit to conducting these aspects of research projects. 6. Personalized, flexible and adaptable compensation processes for patient research partner contribution and collaboration on research project design, processes and activities.
Mutual respect	Establishing a culture of mutual respect facilitated patient partner engagement with PAC activities and working groups	1. Clear communication about role, expectations, time commitment, training and compensation being offered for patient research partner per activity. Encouragement of peer mentorship between patient research partners. 2. Transparency in communication about project progress and any changes (e.g., regular updates and sharing of project documents and information) can assure meaningful engagement and trust. 3. Support for early discussions about working together and co‐building Terms of Reference to explain project background, scope and timelines, to establish meeting guidelines and to confirm member expectations, roles and responsibilities. 4. An introductory workshop to establish and share the principles of patient‐oriented research including the core principles of working together in respectful and mutually beneficial ways. 5. Identification and provision of training and capacity‐building workshops to patient research partners.
Co‐build	Co‐design approaches yield rich research outputs with more patient‐centred language and relevant tailored details	1. Early inclusion of patient research partners in co‐building project processes and documents such as a living Terms of Reference document. 2. Graduated support with co‐building. Socialize and establish democratic co‐building processes. Recognizing interest, motivations and opportunities may change as the project progresses. 3. Building capacity in the use of tools (e.g., JamBoard, Google documents) to support multiple people working together on a document and at times suitable to them. 4. Use of group time during meetings to allow for relationship building and generative discussion. ‘Working together’ on documents and activities can socialize awareness of multiple perspectives and assure they are reflected in research outputs. 5. Clear communication and regular updates on project timelines and deadlines can assure all member are regularly included in project activities and projects are completed in a timely matter. Commit to regular feedback and follow‐up loops.