Talia Gutman1,2, Allison Tong1,2, Martin Howell1,2, Kathryn Dansie3, Carmel M Hawley4,5,6, Jonathan C Craig1,2,7, Shilpanjali Jesudason8,9,10, Jeremy R Chapman11, David W Johnson4,5,6, Lisa Murphy9, Donna Reidlinger4,5, Sally Crowe12, Emily Duncanson3, Shyamsundar Muthuramalingam13, Nicole Scholes-Robertson2,13, Amber Williamson13,14, Stephen McDonald3,7,10. 1. Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia. 2. Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW, Australia. 3. Australia and New Zealand Dialysis and Transplant Registry, SA Health and Medical Research Institute, Adelaide, SA, Australia. 4. Australasian Kidney Trials Network, Brisbane, QLD, Australia. 5. Faculty of Medicine, University of Queensland, Brisbane, QLD, Australia. 6. Department of Nephrology, Princess Alexandra Hospital, Brisbane, QLD, Australia. 7. College of Medicine and Public Health, Flinders University, Bedford Park, SA, Australia. 8. Central and Northern Adelaide Renal and Transplantation Service and Royal Adelaide Hospital, Adelaide, SA, Australia. 9. Kidney Health Australia, Melbourne, SA, Australia. 10. Faculty of Health and Medical Sciences, University of Adelaide, Adelaide, SA, Australia. 11. Westmead Clinical School, Westmead Institute for Medical Research, NSW, Australia. 12. Crowe Associates, London, UK. 13. BEAT-CKD Consumer Advisory Board, BEAT-CKD, SA, Australia. 14. Queensland Consumer Consultative Committee, Kidney Health Australia, Brisbane, QLD, Australia.
Abstract
BACKGROUND: There is widespread recognition that research will be more impactful if it arises from partnerships between patients and researchers, but evidence on best practice for achieving this remains limited. METHODS: We convened workshops in three Australian cities involving 105 patients/caregivers and 43 clinicians/researchers. In facilitated breakout groups, participants discussed principles and strategies for effective patient involvement in chronic kidney disease research. Transcripts were analysed thematically. RESULTS: Five major themes emerged. 'Respecting consumer expertise and commitment' involved valuing unique and diverse experiential knowledge, clarifying expectations and responsibilities, equipping for meaningful involvement and keeping patients 'in the loop'. 'Attuning to individual context' required a preference-based multipronged approach to engagement, reducing the burden of involvement and being sensitive to the patient journey. 'Harnessing existing relationships and infrastructure' meant partnering with trusted clinicians, increasing research exposure in clinical settings, mentoring patient to patient and extending reach through established networks. 'Developing a coordinated approach' enabled power in the collective and united voice, a systematic approach for equitable inclusion and streamlining access to opportunities and trustworthy information. 'Fostering a patient-centred culture' encompassed building a community, facilitating knowledge exchange and translation, empowering health ownership, providing an opportunity to give back and cultivating trust through transparency. CONCLUSIONS: Partnering with patients in research requires respect and recognition of their unique, diverse and complementary experiential expertise. Establishing a supportive, respectful research culture, responding to their individual context, coordinating existing infrastructure and centralizing the flow of information may facilitate patient involvement as active partners in research.
BACKGROUND: There is widespread recognition that research will be more impactful if it arises from partnerships between patients and researchers, but evidence on best practice for achieving this remains limited. METHODS: We convened workshops in three Australian cities involving 105 patients/caregivers and 43 clinicians/researchers. In facilitated breakout groups, participants discussed principles and strategies for effective patient involvement in chronic kidney disease research. Transcripts were analysed thematically. RESULTS: Five major themes emerged. 'Respecting consumer expertise and commitment' involved valuing unique and diverse experiential knowledge, clarifying expectations and responsibilities, equipping for meaningful involvement and keeping patients 'in the loop'. 'Attuning to individual context' required a preference-based multipronged approach to engagement, reducing the burden of involvement and being sensitive to the patient journey. 'Harnessing existing relationships and infrastructure' meant partnering with trusted clinicians, increasing research exposure in clinical settings, mentoring patient to patient and extending reach through established networks. 'Developing a coordinated approach' enabled power in the collective and united voice, a systematic approach for equitable inclusion and streamlining access to opportunities and trustworthy information. 'Fostering a patient-centred culture' encompassed building a community, facilitating knowledge exchange and translation, empowering health ownership, providing an opportunity to give back and cultivating trust through transparency. CONCLUSIONS: Partnering with patients in research requires respect and recognition of their unique, diverse and complementary experiential expertise. Establishing a supportive, respectful research culture, responding to their individual context, coordinating existing infrastructure and centralizing the flow of information may facilitate patient involvement as active partners in research.
Authors: Dev K Jegatheesan; Richard Modderman; Rathika Krishnasamy; Allison Tong; Jeff S Coombes; Andrea K Viecelli; David W Johnson; Nicole Isbel Journal: Kidney Int Rep Date: 2021-02-13