Abstract: TH-PO0618
Can-SOLVE CKD: Preparing Patient Partners for Meaningful and Effective Engagement in Scientific Research Meetings
Session Information
- CKD: Clinical - Guidelines, Biomarkers, Progression, Procedures, Outcomes, and More
October 22, 2026 | Location: Exhibit Hall A, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: CKD (Non-Dialysis)
- 2202 CKD (Non-Dialysis): Clinical, Outcomes, and Trials
Authors
- Talson, Melanie D., The University of British Columbia Faculty of Medicine, Vancouver, British Columbia, Canada
- Jones, Jocelyn M., The University of British Columbia Faculty of Medicine, Vancouver, British Columbia, Canada
- Macdonald, Cynthia, The University of British Columbia Faculty of Medicine, Vancouver, British Columbia, Canada
- Ozbay, Tara D., The University of British Columbia Faculty of Medicine, Vancouver, British Columbia, Canada
- Sunwold, Duane, Patient Partner, Can-SOLVE CKD UBC, Vancouver, British Columbia, Canada
- Wang, Bill, Patient Partner, Can-SOLVE CKD UBC, Vancouver, British Columbia, Canada
- Levin, Adeera, St. Paul's Hospital, Vancouver, British Columbia, Canada
Background
In 2024, Can-SOLVE CKD (CIHR-SPOR Network) was invited by the International Society of Nephrology (ISN) to facilitate the engagement of a group of six people with lived experience (PWLE) in the consensus meeting Changing Paradigms of Studies in Kidney Diseases, in key areas: patient-reported outcome measures, biomarker targets and thresholds, alternative trial designs, and hierarchical composite end points. Patient-oriented research (POR) and patient engagement in research are increasingly recognized as critical to ensuring that research aligns with patient priorities. Supporting PWLE to engage meaningfully in a scientific and technical meeting with international stakeholders including industry representatives, regulators, clinicians, researchers, nephrologists, laboratory scientists and statisticians required a systematic approach to preparation, support, liaison and facilitation.
Methods
We recruited six PWLE representing diverse perspectives (geographically, demographically, and with varied lived experience of CKD). We examined the ISN background material and co-developed a capacity-building strategy that included training, development of plain language summaries, and presentation practice. We convened for four virtual preparatory meetings over the course of three months and one in-person pre-meeting (Table 1: Preparatory Meetings and Activities).
Results
Meeting attendees described a shared appreciation of the invaluable participation of PWLE in this important meeting. PWLE described their experience as positive and felt well-prepared to participate and engage meaningfully.
Conclusion
As kidney disease research looks ahead to advancing and embedding POR in defining future priorities, the inclusion of the patient voice is essential. In order to support meaningful engagement of PWLE in scientific and technical meetings, it is necessary to ensure there is adequate time, training and familiarity with the process and materials to support effective and meaningful participation.
Acknowledgment
Thank you to the patient partners who contribute their voice and lived experience to advancing kidney research.
TABLE 1: Preparatory meetings and activities
| MEETING | GOAL | ACTIVITY | MATERIALS |
| Month 1 Meeting 1 (virtual) | Meet the team, become comfortable with one another | Roundtable introductions, Icebreaker activities | List of participants including location and role at meeting |
| Month 2 Meeting 2 (virtual) | Familiarization with meeting purpose and agenda | Review agenda and Q & A | Meeting agenda |
| Month 2 Meeting 3 (virtual) | Train on technical and scientific material | Principal Investigator/expert review material content | Plain language summary booklet and journal articles |
| Month 3 Meeting 4 (virtual) | Prepare introduction presentations | Practice 3 minute introduction presentations | Prepare slide deck |
| Month 3 Meeting 5 (in-person) | Feel comfortable with format and content | Dry run of meeting | Plain language summary booklet |
Funding
- Government Support – Non-U.S.