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Partnering with patients and caregivers to enrich research and care in kidney disease: values and strategies.

Authors :
Cazzolli, Rosanna
Sluiter, Amanda
Guha, Chandana
Huuskes, Brooke
Wong, Germaine
Craig, Jonathan C
Jaure, Allison
Scholes-Robertson, Nicole
Source :
Clinical Kidney Journal; 2023 Supplement, Vol. 16, pi57-i68, 12p
Publication Year :
2023

Abstract

Patient and caregiver involvement broadens the scope of new knowledge generated from research and can enhance the relevance, quality and impact of research on clinical practice and health outcomes. Incorporating the perspectives of people with lived experience of chronic kidney disease (CKD) affords new insights into the design of interventions, study methodology, data analysis and implementation and has value for patients, healthcare professionals and researchers alike. However, patient involvement in CKD research has been limited and data on which to inform best practice is scarce. A number of frameworks have been developed for involving patients and caregivers in research in CKD and in health research more broadly. These frameworks provide an overall conceptual structure to guide the planning and implementation of research partnerships and describe values that are essential and strategies considered best practice when working with diverse stakeholder groups. This article aims to provide a summary of the strategies most widely used to support multistakeholder partnerships, the different ways patients and caregivers can be involved in research and the methods used to amalgamate diverse and at times conflicting points of view. [ABSTRACT FROM AUTHOR]

Details

Language :
English
ISSN :
20488505
Volume :
16
Database :
Complementary Index
Journal :
Clinical Kidney Journal
Publication Type :
Academic Journal
Accession number :
172895745
Full Text :
https://doi.org/10.1093/ckj/sfad063