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Table 5 Content of the terms of reference document for patient engagement

From: Expanding enhanced recovery protocols for cardiac surgery to include the patient voice: a scoping review protocol

Subsection

Key components

Project overview

A description of the research project, including background information and overarching goals.

The research team

Members of core working group and their positions.

Responsibilities and opportunities for patient researchers, patient researcher liaison/facilitator, and the broader research team

a. Patient researchers—to participate in the research process, communicate concerns to the research liaison, prepare for meetings by reviewing documents, etc.

b. Patient researcher liaison/facilitator—to communicate regularly with the patient researchers, listen to and address concerns, ensure integration of patient researchers into the research team, etc.

c. Research team—value lived experience as a form of knowledge, use knowledge appropriately and confidentially, maintain fair and structured relationships, be mindful of word choice in written materials.

Process (work plan)

A model for the process of patient engagement during biweekly meetings; a project timeline outlining milestones and frequency of full-team meetings.

Expected outcomes

Major project milestones, including formal publications, non-traditional knowledge sharing activities, future research projects, etc.

Our working environment

A description of the environment fostered by the research team, as guided by the principles within Strategy for Patient-Oriented Research’s Patient Engagement Framework (i.e., mutual respect, inclusiveness, co-building, and supports (safe space, educational supports, financial supports) [26].