Table 1:

Activities that reflect core values for patient and caregiver involvement in clinical research.

Value	Goal	Activity [2, 23, 24, 57, 71, 93]
Respect	Setting the foundation for partnership by creating a culture of mutual respect	• Co-produce codes of conduct and terms of reference • Give sufficient notice for meetings • Follow through on commitments, e.g. meetings or requests for information • Document all suggestions and ideas, along with the reasons for accepting or rejecting them
Transparency	Information sharing	• Share study resources such as funding applications and study protocols • Clearly document stakeholder roles • Create a project ‘road map’ with clear and realistic timelines • Openly share project successes and failures • Conduct ongoing monitoring and evaluation
Reciprocity	Bi-directional knowledge exchange and learning	• Distribute meeting materials prior to meetings • Schedule meetings with enough time for questions • Allocate dedicated time during meetings for stakeholder input • Provide lay summaries where necessary • Have briefing/debriefing sessions after major involvement activities, e.g. a consensus workshop
Inclusion	Equal opportunity for stakeholders to be involved in research	• Create an engagement plan • Include multiple patient partners in steering committees • Work with physicians, nurses and community liaisons to engage patients and caregivers • Alternate location and timing of meetings to suit stakeholder needs • Offer flexible meeting arrangements, e.g. in person and online
Diversity	A broad range of perspectives are included	• Promote partnership opportunities through patient networks and community organisations • Purposively sample partners based on relevant knowledge and experience • Purposively sample partners to reflect a broad range of demographics • Undertake cultural training