Kidney Week

Abstract: FR-PO1047

Can-SOLVE CKD: Capturing Our IDEA Journey as a Patient-Oriented Kidney Research Network

Session Information

• Social, Environmental, and Economic Determinants of Kidney Health
  October 25, 2024 | Location: Exhibit Hall, Convention Center
  Abstract Time: 10:00 AM - 12:00 PM

Category: Diversity and Equity in Kidney Health

• 900 Diversity and Equity in Kidney Health

Authors

• Turino Miranda, Keila Lazara, McGill University, Montreal, Quebec, Canada

Keila Lazara Turino Miranda, MS, MSc

• Jones, Jocelyn M., Can-SOLVE CKD, Vancouver, British Columbia, Canada

Jocelyn M. Jones

• Harris, Heather, Can-SOLVE CKD, Vancouver, British Columbia, Canada

Heather Harris, MS

• Scholey, James W., University of Toronto, Toronto, Ontario, Canada

James W. Scholey, MD

• Talson, Melanie D., Can-SOLVE CKD, Vancouver, British Columbia, Canada

Melanie D. Talson, MA

• Hampson, Michelle, Can-SOLVE CKD, Vancouver, British Columbia, Canada

Michelle Hampson

• Cook, Charles L., Can-SOLVE CKD, Vancouver, British Columbia, Canada

Charles L. Cook

• Wysocki, Julie, Kidney Foundation of Canada, Montreal, Quebec, Canada

Julie Wysocki, MA

• Hainstock, Taylor, BC Support Unit - Island Health, Victoria, British Columbia, Canada

Taylor Hainstock, MA

• Allu, Selina, Can-SOLVE CKD, Vancouver, British Columbia, Canada

Selina Allu, MA

Background

Despite increasing recognition that Inclusion, Diversity, Equity, and Accessibility (IDEA) principles are essential to research, how to meaningfully quantify and apply these principles at a network level is unclear. Here, we outline a holistic approach taken by our patient-oriented kidney research network, Can-SOLVE CKD.

Methods

A multidisciplinary team, composed of patient partners, researchers, clinicians, and network partners, co-developed a series of 7 brainstorming workshops (3 groups; 19 patient partners, 17 researchers/clinicians, 13 staff from July 2023 to January 2024) to identify the network’s existing IDEA strengths and key priorities. A thematic analysis identified themes to inform the network’s IDEA mobilization plan.

Results

Four themes were identified: (1) Strength in existing network culture through Indigenous input and patient-oriented approach, establishing culturally safe spaces and ensuring systematic support and safety in communication; (2) Barriers in equitable participation due to a fragmented understanding of opportunities and accommodation limitations; (3) Ensuring permanence within the broader health context via maintenance concerns, awareness of network initiatives and promoting kidney health equity; and, (4) Outreach at the public, network and team levels focused on overcoming recruitment barriers and enhancing impact. This reveals an opportunity to tailor implementation strategies based on the scale of change within the network, ensuring that IDEA interventions are appropriately calibrated to the magnitude of the mobilization plan.

Conclusion

Meaningful assessment and application of IDEA principles requires the involvement of people with diverse lived experiences. We describe a collaborative, holistic approach our patient-oriented kidney research network has taken to identify core strengths and guide our IDEA strategy moving forward.

Funding

• Government Support – Non-U.S.