Abstract
Context:
Values and protocols for engaging patient-partners and community members in patient-oriented research are frequently focused on recruitment and on-boarding. However, relational equity, which is “something that is carefully cultivated and preserved by those who desire to influence others”, is crucial for the retention of patient-partner members over time and the establishment of trust between community members and the other Network partners.
Objectives:
1. To describe relational equity and why it is important to the members of the Pan-Canadian Patient Council of the Canadian Primary Care Research Network (CPCRN). 2. To identify and name the values co-created by the CPCRN’s Pan-Canadian Patient Council, along with a protocol for the establishment of relational equity across the CPCRN.
Design:
The overall design was informed by the integration of community-based participatory research and transformative action research. This approach facilitated the process of co-creation of identified issues to the forefront while utilizing the strengths and contributions of the community.
Setting and Participants:
The members of the CPCRN Pan-Canadian Patient Council while employing a protocol of relational equity. The protocol included establishing relational equity through various talking circles with a facilitator who guided the virtual discussions.
Intervention(s):
The co-creation of values and a protocol of relational equity was developed by the Pan-Canadian Patient Council will be introduced to other members and committees of the CPCRN.
Results:
The Pan-Canadian Patient Council has met at least once a month to co-create the structure and activities of the Patient Council. A dialogue about values, facilitated by a member of the Patient Council, created an opportunity to build trusting relationships which, in turn, will drive transparency and an opportunity for co-creation within and external to the CPCRN, as well as ensure a culturally safe environment. The CPCRN Executive Director and several researchers provided guidance and support for the process.
Conclusions:
The co-creation of the governance structure for the Pan-Canadian Patient Council brought together the members in a way that addresses the potential power imbalances within and external to the Patient Council.