The involvement of patients with lived experience of kidney disease in nephrology research can strengthen the relevance and uptake of evidence to achieve better outcomes. The past two decades have seen increased efforts to involve patients and caregivers, particularly in research priority setting, study design and dissemination. However, further efforts are needed to improve the transparency and diversity of patient involvement in research.
This is a preview of subscription content, access via your institution
Access options
Access Nature and 54 other Nature Portfolio journals
Get Nature+, our best-value online-access subscription
$32.99 / 30 days
cancel any time
Subscribe to this journal
Receive 12 print issues and online access
$189.00 per year
only $15.75 per issue
Buy this article
- Purchase on SpringerLink
- Instant access to full article PDF
Prices may be subject to local taxes which are calculated during checkout
References
Scholes-Robertson, N. We want to be part of the solution, not just be the problem: why patients need to be involved in scientific conferences? Nephrology (Carlton) 25, 369–370 (2020).
Gutman, T. et al. Systematic review of patient and caregiver involvement in CKD research. Kidney Int. Rep. https://doi.org/10.1016/j.ekir.2025.03.018 (2025).
Guha, C. et al. Patient needs and priorities for patient navigator programmes in chronic kidney disease: a workshop report. BMJ Open 10, e040617 (2020).
Tong, A. et al. Research priorities in CKD: report of a national workshop conducted in Australia. Am. J. Kidney Dis. 66, 212–222 (2015).
Manns, B. et al. Setting research priorities for patients on or nearing dialysis. Clin. J. Am. Soc. Nephrol. 9, 1813–1821 (2014).
Engels, N. et al. Development of an online patient decision aid for kidney failure treatment modality decisions. BMC Nephrol. 23, 236 (2022).
Himmelfarb, J., Vanholder, R., Mehrotra, R. & Tonelli, M. The current and future landscape of dialysis. Nat. Rev. Nephrol. 16, 573–585 (2020).
Lang, I. et al. How common is patient and public involvement (PPI)? Cross-sectional analysis of frequency of PPI reporting in health research papers and associations with methods, funding sources and other factors. BMJ Open 12, e063356 (2022).
Staniszewska, S. et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. BMJ 358, j3453 (2017).
Tong, A. et al. Reporting guideline for priority setting of health research (REPRISE). BMC Med. Res. Methodol. 19, 243 (2019).
Recabarren, S. J. et al. Reporting the involvement of patients and caregivers in identifying and designing healthcare interventions: the IDEAS framework. J. Clin. Epidemiol. https://doi.org/10.1016/j.jclinepi.2025.111784 (2025).
Hatch, S., Fitzgibbon, J., Tonks, A. J. & Forty, L. Diversity in patient and public involvement in healthcare research and education—realising the potential. Health Expect. 27, e13896 (2024).
Gutman, T. et al. Patient and caregiver experiences and attitudes about their involvement in research in chronic kidney disease. Clin. J. Am. Soc. Nephrol. 17, 215–227 (2022).
Bateman, S. et al. Real ways of working together: co‐creating meaningful Aboriginal community consultations to advance kidney care. Aust. N. Z. J. Public Health 46, 614–621 (2022).
Boivin, A. et al. Evaluating patient and public involvement in research. BMJ 363, k5147 (2018).
Author information
Authors and Affiliations
Contributions
Positionality statement
N.S.-R. has lived experience of chronic kidney disease, peritoneal dialysis and transplantation, and is a clinical physiotherapist and a research fellow at The University of Sydney.
Corresponding author
Ethics declarations
Competing interests
The authors declare no competing interests.
Rights and permissions
About this article
Cite this article
Scholes-Robertson, N., Jaure, A. Patient involvement in nephrology research. Nat Rev Nephrol 21, 718–719 (2025). https://doi.org/10.1038/s41581-025-00987-6
Published:
Issue date:
DOI: https://doi.org/10.1038/s41581-025-00987-6