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Table 4 Terms of reference: Subsections and key components within each

From: Models and frameworks of patient engagement in health services research: a scoping review protocol

Subsection

Key components

Preamble

Brief background and project aim(s).

The research team

Team members’ names and positions.

Responsibilities and opportunities for patient partners

General expectations (e.g., communicate feedback, concerns, requests for accommodations, etc. to the patient partner-researcher liaison; review documents ahead of and participate in meetings; provide timely feedback, etc.) and stages of the research process that patient partners will be involved in and associated major tasks.

Responsibilities and opportunities for patient partner – researcher liaison

Frequency and nature of contact with patient partners and mechanisms that help ensure patient partners feel included, heard and valued.

Responsibilities and opportunities for researchers

General expectations related to patient engagement (e.g., recognize lived experience as a form of knowledge and expertise, be mindful of wording for any written materials, maintain a fair and structured relationship that does not cross professional boundaries, etc.).

Process (work plan)

General project related responsibilities of the other team members, patient partners’ preferred modes of feedback, frequency of full-team meetings.

Expected outcomes

Major project milestones (e.g., proposed manuscripts, presentations, potential future projects, etc.).

Compensation (for patient partners)

Amount that patient partners will be compensated for project-related activities (e.g., meeting participation, transportation, and time spent preparing for meetings, reviewing and providing feedback on study documents, etc.) and preferred types of compensation (e.g., monetary, gift cards to specific vendors, reimbursement for registration to courses/workshops, etc.).