Establishing an evidence-based framework for involving patients in research about chronic kidney disease

Abstract

Involving consumers (defined as patients and informal caregivers/family members) in research as more than ‘subjects’ is now globally advocated to improve the relevance, importance, and quality of research. Growing evidence in the general population and some specific disease groups continues to demonstrate the benefits of consumer involvement in research. Despite this, consumer involvement in research in chronic kidney disease (CKD) remains scarce as researchers are uncertain about approaches and often lack resources to undertake it. Patients with CKD and their families face unique challenges that may hinder their ability or willingness to be involved in research. Scant conducting, reporting and publishing of consumer involvement activities in this population limits the relevance of research to consumers and the evidence for best practice remains in its infancy. This thesis aims to summarise the existing evidence, generate new evidence to address gaps in best practice and synthesise the data to develop a practical evidence-based framework for the meaningful, impactful and sustained involvement of consumers in CKD research. The first part of this thesis (chapters 2-5) provides a comprehensive overview of the literature for consumer involvement in research and shared decision-making in published CKD research. It develops a conceptual understanding of the benefits, challenges and gaps of consumer involvement in this population, based on the literature and perspectives from consumers and health professionals. The second part of this thesis (chapters 5, 6, 7) contains applied empiric studies demonstrating and evaluating consumer involvement in research and decision-making in real world settings. The final chapter integrates the key findings and recommendations to provide a practical framework for researchers to guide best practice in involving consumers in all types of research in CK