REPORTING THE INVOLVEMENT OF PATIENTS AND CAREGIVERS IN IDENTIFYING AND DESIGNING INTERVENTIONS FOR HEALTH RESEARCH: THE IDEAS FRAMEWORK
Mr Javier Recabarren1,2, Ms REBECCA WU1,2, Mrs NICOLE SCHOLES-ROBERTSON1,2, Ms ANASTASIA HUGHES1,2, Mrs ANITA VAN ZWIETEN1,2, Mrs GERMAINE WONG1,2, Mrs AMANDA SLUITER1,2, Mrs ANDREA VIECELLI3,4, Mr JONATHAN C CRAIG55, Mr STEPHEN MCDONALD6, Mr DAVID TUNNICLIFFE1,2, Mr ARMANDO TEIXEIRA-PINTO1,2, Mrs SIAH KIM1,2, Mrs CARMEL M HAWLEY4,7,8, Mrs ALLISON JAURE1,2
1Center For Kidney Research (ckr), Sydney, Australia, 2Sydney School of Public Health, University of Sydney, Sydney, Australia, 3Department of Kidney and Transplant Services, Princess Alexandra Hospital, Brisbane, Australia, 4Australasian Kidney Trials Network (AKTN), Faculty of Medicine, University of Queensland, Brisbane, Australia, 5College of Medicine and Public Health, Flinders University, Adelaide, Australia, 6Australia and New Zealand Dialysis and Transplant Registry, SA Health and Medical Research Institute , Adelaide, Australia, 7Faculty of Medicine, University of Queensland, Saint Lucia, Australia, 8Metro South Kidney and Transplant Services, Princess Alexandra Hospital, , Woolloongabba, Australia
Background and Aims: Patient and caregiver involvement in health research can maximise the relevance and uptake of research findings. However, there is little guidance for reporting the involvement of patients and caregivers in the identification and design of health interventions, including in research in chronic kidney disease (CKD). We aimed to develop a reporting framework for involving patients and caregivers in identifying and designing interventions for health research.
Methods: Electronic literature databases were searched for sources (guidelines, frameworks and reviews for conducting, reporting or evaluating patient and caregiver involvement in the identification and design of interventions for research), and primary studies reporting patient and caregiver involvement in interventions to April 2024. A comprehensive list of reporting items based on the identified sources and primary studies was inductively developed. The IDEntifying And designing interventions for health reSearch (IDEAS) framework was piloted with a diverse range of primary studies.
Results: Sixteen sources (e.g. guidelines and frameworks) and 40 primary studies were used to develop the reporting items for the IDEAS framework. The framework includes 14 reporting items that cover five domains: purpose (i.e. role of patients/caregivers, type and scope of interventions, criteria considered e.g. acceptability, feasibility); theory/framework used; population (i.e. inclusion criteria, identification and selection, characteristics); mode of involvement (i.e. process of involvement, frequency, duration, reimbursement); and output and impact. Each reporting item includes a descriptor and examples.
Conclusions: The IDEAS framework can help to ensure transparency in describing the process of reporting patients and caregivers in identifying and designing interventions for CKD research. Ultimately, this may support the design of interventions that address the needs, preferences and priorities of patients and caregivers with CKD.
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Biography:
Javier Recabarren Silva is Associate Lecturer at the Centre for Kidney Research at the School of Public Health at the The University of Sydney. Javier was awarded his PhD in 2022 in the field of political economy at the School of Social and Political Sciences, at The University of Sydney. His main areas of research are the analysis of health policies, the impacts of the social determinants of health, and the involvement of patients and caregivers in research.