Advancing Equity, Diversity, Inclusion, and Accessibility in a Patient-Oriented Kidney Research Network: A Can-SOLVE CKD Program Report.

Abstract

Purpose of program: Despite increasing recognition that equity, diversity, inclusion, and accessibility (EDIA) principles are essential to research and improving health outcomes, there is little data to guide the incorporation of these principles in a research network. Here, we outline a collaborative approach taken by our kidney Strategic for Patient-Oriented Research (SPOR) network, Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD), to better understand the application of EDIA in a kidney research network.

Sources of information: An internal network audit of EDIA strengths and future directions.

Methods: Between June 2023 and January 2024, Can-SOLVE CKD's EDIA working group completed a network-wide audit through seven virtual workshops, in which patient partners, research team members, and staff identified the network's existing EDIA strengths and needs for improvement. Responses were collected on the Mural platform in real-time. Repeated or agreed-upon comments were displayed as multiple identical entries. A thematic analysis was conducted to extract key themes to inform the EDIA mobilization plan moving forward.

Key findings: We collated feedback from 49 network members (16 patient partners, 19 research team members, and 14 staff) that included 441 individual responses from seven workshops. The thematic analyses revealed three key strengths: the inclusion and promotion of Indigenous voices and ways of knowing, patient partner participation empowerment and leadership, and network-wide acceptance of EDIA principles. Future direction themes included: increasing diversity of perspectives by outreach to under-represented communities, challenging biases against patient-oriented research, and improving accommodations for patient partner participation.

Limitations: This analysis only captures the perspectives of people who are already within the network. While our network includes diverse people, some demographics and their respective perspectives may be missing.

Implications: Many of Can-SOLVE CKD's EDIA strengths can be attributed to a long-standing culture of meaningful inclusion of patient partners, strong leadership by Indigenous peoples and patient partners embedded in the network, as well as training, onboarding and compensation structures for patient partners. While current strategies have fostered a strong foundation, the next steps must ensure that inclusivity extends across all demographic populations and disciplinary boundaries. Participant suggestions, including grassroots outreach, hiring diverse leadership, and improving multilingual communication, demonstrate a willingness and readiness within the network to take actionable steps to further strengthen EDIA.