Program Report: KidneyPRO, a Web-based Training Module for Patient Engagement in Kidney Research.

Area of Science:

• Health Research Capacity Building
• Patient Engagement in Research
• Nephrology Research Education

Background:

• Patient-oriented research (POR) is gaining traction, focusing on patient-relevant outcomes.
• Many patients in Canada lack familiarity with health research terminology and practices.
• There is a need for accessible educational tools to facilitate patient engagement in research.

Purpose of the Study:

• To describe the development of KidneyPRO, an online learning module for patients and families on kidney research in Canada.
• To provide a tool that supports meaningful patient involvement in the research enterprise.
• To address the identified need for disease-specific training in POR within the Canadian kidney research network.

Main Methods:

• Identified need through participant feedback and a 2017 network-wide survey assessing training needs.
• Formed a multi-stakeholder team, including patient partners, to define learning objectives and content.
• Adapted existing resources and utilized a DoTTI framework for iterative content and interface refinement in consultation with patient partners.

Main Results:

• KidneyPRO is a web-based training module designed to enhance understanding of patient-oriented and kidney-specific research in Canada.
• The module was co-designed and vetted by patients, ensuring clear, user-friendly content.
• KidneyPRO includes links to research opportunities and addresses a gap in kidney-specific POR education.

Conclusions:

• KidneyPRO provides Canadians with CKD or at high risk an educational resource for engaging in kidney research.
• Limitations include accessibility for those without internet and current non-compliance with all Web Content Accessibility Guidelines.
• Regular content updates are necessary to keep pace with the evolving landscape of patient partnership in research.