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Kidney Week

Abstract: PO1380

Enhancing Patient Care by Partnering with Patients in Kidney Health Research

Session Information

Category: Educational Research

  • 800 Educational Research

Authors

  • Getchell, Leah, Can-SOLVE CKD Network, Vancouver, British Columbia, Canada
  • Beaucage, Mary, Can-SOLVE CKD Network, Vancouver, British Columbia, Canada
  • Hillier, David, Can-SOLVE CKD Network, Vancouver, British Columbia, Canada
  • Macphee, Anne, Can-SOLVE CKD Network, Vancouver, British Columbia, Canada
  • Vorster, Arris Hans, Can-SOLVE CKD Network, Vancouver, British Columbia, Canada
  • Pollock, Graham James, Can-SOLVE CKD Network, Vancouver, British Columbia, Canada
Background

Canada’s Strategy for Patient-Oriented Research (SPOR) has raised awareness of the need to generate knowledge that is more relevant to patients and to accelerate the translation of evidence into clinical care. Members of the Canadian nephrology community have come together to develop a national patient-oriented research network, Can-SOLVE CKD, that is partnering with patients to close existing gaps in kidney disease knowledge in order to deliver better health outcomes. The Can-SOLVE CKD Network brings together patients and nephrology researchers to transform treatment and care for Canadians living with or at risk for chronic kidney disease.

Methods

The network’s 18 research projects are informed by two national priority-setting exercises conducted with patients, their families and care providers. As the network executes the projects, patients have been integrated into research teams, bringing an enhanced “patient lens” to bear on all aspects of the research life cycle: design, development, recruitment, implementation, and dissemination. Patients are also at the centre of the network’s governance model, which incorporates a Patient Governance Circle and an Indigenous Peoples’ Engagement and Research Council.

Results

Can-SOLVE CKD researchers have reported the positive impact of partnering with patients. “My research is better” is often cited as an outcome of patient engagement within the network. Patient partner involvement on the network’s Research Operations Committee has enriched the annual review of projects, resulting in valuable, real-world feedback to project teams. Respondents to the network’s patient engagement survey report feeling better informed about and having greater trust in kidney research as a result of their participation.

Conclusion

We have witnessed a shift in the culture of nephrology research in Canada paralleling the broader movement toward patient-oriented research. The traditional role of patients as research subjects has evolved to include patients as valuable and equal members of Can-SOLVE CKD’s research projects.

Funding

  • Government Support - Non-U.S.