Patient-Centered Research and Innovation in Nephrology

Anastasia Hughes; Chandana Guha; Amanda Sluiter; Jonathan Himmelfarb; Allison Jauré

doi:10.1053/j.akdh.2023.12.004

Patient-Centered Research and Innovation in Nephrology

Adv Kidney Dis Health. 2024 Jan;31(1):52-67. doi: 10.1053/j.akdh.2023.12.004.

Authors

Anastasia Hughes¹, Chandana Guha², Amanda Sluiter², Jonathan Himmelfarb³, Allison Jauré²

Affiliations

¹ Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia. Electronic address: anastasia.hughes@sydney.edu.au.
² Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia.
³ Division of Nephrology, Department of Medicine, University of Washington, Seattle, Washington; Kidney Research Institute, Seattle, WA.

PMID: 38403395
DOI: 10.1053/j.akdh.2023.12.004

Abstract

Patient involvement in research can improve the relevance of research, consequently enhancing the recruitment, retention, and uptake of interventions and policies impacting patient outcomes. Despite this, patients are not often involved in the design and conduct of research. The research agenda and innovations are frequently determined by the interest of health and industry professionals rather than proactively aligning with the priorities of patients. It is now being encouraged and recommended to engage patients in research priority setting to ensure interventions and trials report outcomes valuable to patients, moving away from a history of overlooking the outcomes that reflect the feel and function of patients. Involving patients ensures constant innovative research in nephrology, as this broader depth of evidence fortifies reliability and validity through knowledge gained from lived experience. Findings from such research can enhance clinical practice and strengthen decision-making and policy to support better outcomes. We aim to outline principles and strategies for patient involvement in research, including setting research priorities, identifying and designing interventions, selecting outcomes, and disseminating and translating research. Principles and strategies including engagement, education and training, empowerment, and connection and community provide guidance in patient involvement. There are increasing efforts to involve patients across all stages of research including setting research priorities. Efforts are rising to involve patients across all stages of research including priority setting, identifying and designing interventions, selecting outcomes, and dissemination and translation. Patient involvement throughout the research cycle drives innovative investigations ensuring funding, efforts, and resources are directed toward priorities of patients, contributing to catalyst advancements in care and outcomes.

Keywords: Innovation; Kidney; Nephrology; Patient-centered; Research.

Publication types

Review

MeSH terms

Humans
Nephrology*
Patient-Centered Care
Patients
Reproducibility of Results