Table 2:

Activities that support key strategies for patient and caregiver involvement in clinical research.

Strategy	Goal	Activity [2, 23, 24, 57, 71, 93]
Relationship building	Creating a supportive and productive intellectual environment; establishing trust	• Develop relationships with advocacy groups and community organisations • Allow time for casual interactions during face-to-face meetings e.g. morning tea and afternoon tea • Plan team-building activities • Be conscious of power imbalances and avoid the use of titles
Recognition	Acknowledge contributions	• Acknowledge stakeholder input in publications • Co-present at project meetings and conferences • Provide financial reimbursement for incurred expenses • Follow up involvement activities with expressions of gratitude and be explicit about how stakeholder input has made an impact
Communication	Information is shared in a timely and accessible manner	• Avoid jargon and acronyms • Organize written information in manageable chunks using clearly defined headers • Use innovative methods such as infographics or YouTube videos • Provide regular updates about study progress • Create a glossary of common terms • Ask about preferred mode of communication
Capacity building	Stakeholders have the knowledge and skills to partner effectively in research	• Ask stakeholders what they would like to know • Ask stakeholders what they would like other team members to know • Design flexible training programs tailored to stakeholder needs
Support	Sufficient time and resources are available to initiate and maintain partnerships	• Designate a point of contact for patient partners, i.e. someone to approach for one-on-one support • Employ experienced personnel dedicated to organising engagement activities • Provide orientation