Table 6 Strategies to support engagement in large research teams and networks based on study findings

Communication

•Have clearly defined roles, tasks, and expectations for patient-partners at each research phase

•Share time commitment information and compensation information from the start

•Have regular follow-ups/check-ins re: tasks, project updates

•Ask patient-partners if the “ask” is too big. If yes, break task into smaller components and get more than one patient-partner to work on tasks

•Encourage in-person meetings (e.g., group meetings) and face-to-face communication

•Use different methods of communication (e.g., phone, Zoom, in-person meetings or conferences)

•Foster open channels of communication so patient-partners feel comfortable speaking up, asking questions, and accepting/declining to participate in different tasks

•Avoid academic jargon

•Share with patient-partners when their feedback has been integrated into projects. Share reasons for not integrating their feedback

•Share information about Network activities/initiatives

•Ensure information shared with patient-partners is in accessible format (e.g., clear, lay language) and there is someone that can be contacted for questions/additional information

•Ensure information is available in both English and French

Training & Support

•Encourage both patient-partners and researchers to participate in training opportunities regarding:

 Research process and unpredictability of research

 Patient-oriented research (e.g., guidelines, framework)

 Working together/Collaboration

 How to maintain engagement throughout the research process

•Offer flexible, learning opportunities (e.g., workshops, online modules, webinars, courses etc.)

•Have compensation guidelines

•Remain flexible regarding compensation (e.g., offer more based on contribution), project extensions, scheduling meetings

•Ensure that compensation does not affect patient-partners’ eligibility for disability support payments etc

•Provide different and meaningful engagement opportunities

Factors specific to patient-partners

•Ensure there is a good match between patient-partner interest/experience and research focus

•Remain flexible regarding:

 How and when patient-partners wish to contribute

 Time allotted for patient-partners to contribute and provide feedback

•Encourage patient-partners who do not have research experience to take up training opportunities

•Acknowledge role of patient-partners and contributions made

•Acknowledge/Provide encouragement for motivation and commitment

Factors specific to researchers

•Encourage openness to receive feedback from patient-partners and bring different perspectives to the table

•Nurture relationship with patient-partner(s)

•Demonstrate commitment to working with patient-partners and research project(s)

Power Imbalances

•Establish advisory councils/committees that contribute to decision making throughout the research process

•Have more than one patient-partner on a given team

•Engage in critical reflection of unconscious biases (e.g., privilege as researchers) and identify strategies that can be used to adjust related behaviours

Relationship-building

•Encourage mutual respect and trust

•Encourage reciprocal partnerships (both patient-partners and researchers benefit)

•Engage patient-partners throughout the research process, from the very beginning (not as an afterthought or tokenism)