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Table 2 RFAC conditions for success

From: The Research Family Advisory Committee: the patient and family view of implementing a research-focused patient engagement strategy

Factors that influence engagement

Conditions for success

The patient

Individual factors that can affect patients’ motivation, willingness, and ability to engage within and across different levels

1. Patients’ knowledge, attitudes, and beliefs

2. Experience with the health care system

3. Self-efficacy

4. Functional capacity

Ensure a diverse mixture of membership considering background, experiences, education, culture, language, and expertise

Schedule meetings in the evenings in an accessible location to accommodate members who have commitments during the day

Offer a variety of means to attend the meeting (e.g. in-person, online virtual, or telephone)

Provide various means of contributing to the discussion (e.g. online chats, email, post-meeting collaborative forums, verbal debriefs)

Ensure volunteer members are compensated for any costs for participation (e.g. parking, public transit costs)

Acknowledge and value diverse backgrounds, perspectives, and ideas by openly discussing and debating input. Do not dismiss ideas without providing your reason and rationale

The Organization

An organization’s characteristics influence patients’ ability to engage in it

 Staff practices

 Organizational policies or practices

Devote appropriate resources to support the group to minimize the amount of time members must spend on RFAC duties outside of meeting times. Examples of support tasks include:

 Identifying and preparing presenters

 Providing facilitation notes to chairs

 Prioritizing pre-reading material

 Collecting feedback from presenters

Promote an environment of continuous improvement, including regularly reflecting on what is working well and what needs re-thinking. Address areas for improvement with actionable ideas

Ensure staff and volunteers are equally informed and updated on organizational changes or updates

Promote a culture of continuous learning by providing opportunities for training and development of knowledge and skills related to research, communication. and co-learning

Society

Patients and organizations operate within a broader social and political environment and are influenced by social norms; regulations; and national, provincial, and local policies

Promote a culture of openly addressing larger cultural issues (e.g. Isolation from COVID-19 restrictions) and how they may affect participation in RFAC duties

Ensure appropriate resources are engaged to adapt quickly to larger societal or organizational impacts