“Can I go to Glasgow?” Learnings from patient involvement at the 17th Congress of the International Society for Peritoneal Dialysis (ISPD)

Author:

Gutman Talia12,Manera Karine E12,Baumgart Amanda12,Johnson David W345,Wilkie Martin6,Boudville Neil7,Craig Jonathan C28,Dong Jie9,Jesudason Shilpa101112,Mehrotra Rajnish13,Neu Alicia14,Shen Jenny I15,Van Biesen Wim16,Blake Peter G17,Brunier Gillian18,Cho Yeoungjee3,Jefferson Nichole19,Lenga Ilan20,Mann Neelem21,Mendelson Asher A22,Perl Jeffrey23,Sanabria Rafael Mauricio24,Scholes-Roberston Nicole1225,Schwartz Daniel26,Teitelbaum Isaac27,Tong Allison12

Affiliation:

1. Sydney School of Public Health, The University of Sydney, Camperdown, New South Wales, Australia

2. Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia

3. Department of Nephrology, Princess Alexandra Hospital, University of Queensland, Queensland, Australia

4. Australasian Kidney Trials Network, Queensland, Australia

5. Translational Research Institute, Queensland, Australia

6. Sheffield Teaching Hospitals, UK

7. Medical School, University of Western Australia, Crawley, Western Australia, Australia

8. College of Medicine and Public Health, Flinders University, Bedford Park, South Australia, Australia

9. Renal Division, Department of Medicine, Peking University First Hospital, Beijing, China

10. Central and Northern Adelaide Renal and Transplantation Service, Royal Adelaide Hospital, South Australia, Australia

11. Faculty of Health and Medical Sciences, University of Adelaide, South Australia, Australia

12. Kidney Health Australia, Adelaide, South Australia, Australia

13. Kidney Research Institute and Harborview Medical Center, Division of Nephrology/Department of Medicine, University of Washington, Seattle, WA, USA

14. The Johns Hopkins University School of Medicine, Baltimore, MD, USA

15. Division of Nephrology and Hypertension, Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Torrance, CA, USA

16. Renal division, Ghent University Hospital, Belgium

17. Division of Nephrology, Western University, London, Ontario, Canada

18. Sunnybrook Research Institute, Toronto, Ontario, Canada

19. Patient and Family Partnership Council, Kidney Health Initiative, American Society of Nephrology, Washington, DC, USA

20. Division of Nephrology, Lakeridge Health, Oshawa, Ontario, Canada

21. Fraser Health Renal Program, Abbotsford Regional Hospital and Cancer Centre, Abbotsford, Canada

22. Department of Medical Biophysics, Schulich School of Medicine and Dentistry, Western University, London, Ontario, Canada

23. Division of Nephrology, Department of Medicine, St. Michael’s Hospital, University of Toronto, Ontario, Canada

24. Renal Therapy Services Latin America, Bogota, Colombia

25. Better Evidence and Translation in Chronic Kidney Disease (BEAT-CKD) Consumer Advisory Board, Australia

26. Faculty of Medicine, University of British Colombia, Fraser Health Home Peritoneal Dialysis Program, British Colombia, Canada

27. University of Colorado Denver – Anschutz Medical Campus, CO, USA

Abstract

Background: Recognition of the discrepancy between the research priorities of patients and health professionals has prompted efforts to involve patients as active contributors in research activities, including scientific conferences. However, there is limited evidence about the experience, challenges, and impacts of patient involvement to inform best practice. This study aims to describe patient and health professional perspectives on patient involvement at the Congress of the International Society for Peritoneal Dialysis (ISPD). Methods: Semi-structured interviews were conducted with 14 patients/caregivers and 15 health professionals from six countries who attended ISPD. Interviews were recorded and transcribed verbatim, and transcripts were analyzed thematically. Results: We identified four themes: protecting and enhancing scientific learning (grounding science in stories, sharing and inspiring new perspectives, distilling the key messages of research presentations, striking a balance between accommodating patients and presenting the science); democratizing access to research (redistributing power, challenging the traditional ownership of knowledge, cultivating self-management through demystifying research); inadequate support for patient/caregiver delegates (lacking purposeful inclusion, challenges in interpreting research findings, soliciting medical advice, difficulty negotiating venue and program, limited financial assistance in attending); and amplifying impact beyond the room (sparking innovation in practice, giving patients and families hope for the future). Conclusions: Patient involvement at the ISPD Congress clarified the applicability of research to patient care and self-management, democratized science, and strengthened the potential impact of research. More structured support for patients to help them purposefully articulate their experience in relation to session objectives may enhance their contribution and their own learning experience.

Publisher

SAGE Publications

Subject

Nephrology,General Medicine

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