T GUTMAN1,2, M HOWELL1,2, K DANSIE3, CHAWLEY4,5,9, J CRAIG1,2,6, A TONG1,2, S JESUDASON7,10,11, J CHAPMAN8, D JOHNSON4,9, L MURPHY10, D REIDLINGER4,5, S MCDONALD3,7,11
1School of Public Health, The University Of Sydney, Sydney, Australia, 2Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, Australia, 3Australia and New Zealand Dialysis and Transplant Registry, South Australian Health and Medical Research Institute, Adelaide, Australia, 4Australasian Kidney Trials Network, Brisbane, Australia, 5University of Queensland, Brisbane, Australia, 6College of Medicine and Public Health, Flinders University, Adelaide, Australia, 7Central and Northern Adelaide Renal and Transplantation Service and Royal Adelaide Hospital, Adelaide, Australia, 8Westmead Clinical School, The Westmead Institute for Medical Research, Sydney, Australia, 9Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia, 10Kidney Health Australia, Brisbane, Australia, 11Adelaide Medical School, University of Adelaide, Adelaide, Australia
Aim: To identify strategies for consumer engagement and involvement in research in chronic kidney disease.
Background: Patient involvement in research is widely advocated to ensure that their priorities are reflected in all phases of the research process, however there is limited evidence on how patients want to be engaged and involved in research.
Methods: 105 patients and caregivers and 43 clinicians and researchers participated in three workshops in Sydney, Adelaide and Brisbane. In facilitated breakout groups, participants discussed principles and strategies for patient involvement in research. Transcripts were analysed thematically.
Results: We identified five themes: fostering a consumer-centred culture (facilitating knowledge exchange and translation, providing an opportunity to give back, empowering health ownership, allaying scepticism and suspicion, building a community); respecting consumer expertise and commitment (clarifying expectations and responsibilities, equipping for meaningful involvement, valuing unique and diverse experiential knowledge, keeping ‘in the loop’ with results and impact); attuning to individual context (a preference based multipronged approach to engagement, reducing the burden of involvement, being sensitive to the patient journey); harnessing existing relationships and infrastructure (partnering with trusted clinicians, increasing exposure in clinical settings, mentoring patient-to-patient, extending reach through established networks); and developing a coordinated approach (power in the collective and united voice, systematic approach for equitable inclusion, streamlining access to opportunities and trustworthy information).
Talia Gutman is a Research Officer and PhD candidate at the Sydney School of Public Health, The University of Sydney, Australia. Her primary research interest is in the area of patient and caregiver involvement in research in chronic kidney disease. She has conducted international qualitative studies on patient involvement in research in chronic kidney disease and has experience in interviews, focus groups, nominal group technique, and survey research to elicit stakeholder perspectives with the goal of informing patient-centred programs and interventions.