Identifying strategies for disseminating research to patients with chronic kidney disease and caregivers: a workshop report

Anastasia Hughes¹, Nicole Scholes-Robertson², Dale Coghlan³, Rebecca Wu², Noa Amir², Hayley Candler⁴, Brydee Cashmore², Yeoungjee Cho⁵, Jonathan C Craig³, Rosanna Cazzolli², Feruza Kholmurodova⁶, Chandana Guha², Carmel M Hawley⁵, Amandi Hiyare³, Martin Howell⁷, Shilpanjali Jesudason⁸, David W Johnson⁵, Dominic Keuskamp⁶, Karine Manera², Jasmin Mazis⁶, Stephen McDonald⁹, Shyamsundar Muthuramalingam¹⁰, Javier Recabarren Silva², Amanda Sluiter², Armando Teixeira-Pinto², David J Tunnicliffe², Anita van Zwieten², Pushparaj Velayudham⁴, Andrea K Viecelli⁵, Germaine Wong², Allison Jaure²; workshop investigators

Collaborators, Affiliations

Collaborators

workshop investigators:
Amanda Sluite, Amandi Hiyare, Anastasia Hughes, Andrea Viecelli, Anita van Zwieten, Brydee Cashmore, Dale Coghlan, David J Tunnicliffe, Dominic Keuskamp, Ferzua Kholmurodova, Germaine Wong, Jasmin Mazis, Javier Recabarren, Karine Manera, Nicole Scholes-Robertson, Noa Amir, Pushparaj Velayudham, Rosanna Cazzolli, Yeoungjee Cho, Adela Yip, Alice Kennard, Allan Blackley, Allison Jaure, Amanda Dominello, Amber Williamson, Amy Luchterhand, Andrew Currey, Angela Rejuso, Anh Kieu, Anh Tho Tien, Annie Conway, Armando Teixeira-Pinto, Bill, Breonny Robson, Carmel Hawley, Chandana Guha, Dale Coghlan, Darling Rojas-Canales, David W Johnson, Dharmenaan Palamuthusingam, Dharshana Sabanayagam, Effie Johns, Erandi Hewawasam, Farzaneh Boroumand, Felicity Lord, Fiona Carlisle, Fleur Tuthill, Georgina Irish, Gorjana Radisic, Hayley Candler, Heather Shepherd, Henry Pleass, Ieyesha Roberts, Irene Mewburn, Isabelle Haklar, Janelle Colquhoun, Janet Kelly, Jill Brown, Jonathan C Craig, Joy Roberts, Kathy Strudwick, Kim Nguyen, Luca Torrisi, Madeleine Reicher, Madeleine Rapisardi, Martin Howell, Melissa Fernandez, Michael Collins, Natalie Brown, Nicky Boulter, Rachel Li, Richard Le Leu, Rick Rapana, Robert Dale, Sadia Jahan, Sally Spence, Samantha Bateman, Seethalakshmi Viswanathan, Shyamsundar Muthuramalingam, Siah Kim, Stephen McDonald, Verlencia En Ying Chu, Victoria Sinka, Vishal Diwan, Wendy Hoy

Affiliations

¹ School of Public Health, the University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, the Children's Hospital at Westmead, Westmead, New South Wales, Australia. Electronic address: anastasia.hughes@sydney.edu.au.
² School of Public Health, the University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, the Children's Hospital at Westmead, Westmead, New South Wales, Australia.
³ Flinders University, Bedford Park, South Australia, Australia.
⁴ Australasian Kidney Trials Network (AKTN), Faculty of Medicine, University of Queensland, Brisbane, Queensland, Australia.
⁵ Australasian Kidney Trials Network (AKTN), Faculty of Medicine, University of Queensland, Brisbane, Queensland, Australia; Department of Kidney and Transplant Services, Princess Alexandra Hospital, Brisbane, Queensland, Australia; Faculty of Medicine, the University of Queensland, Brisbane, Queensland, Australia.
⁶ Australia and New Zealand Dialysis and Transplant Registry (ANZDATA), South Australian Health & Medical Research Institute (SAHMRI), Adelaide, South Australia, Australia.
⁷ School of Public Health, the University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, the Children's Hospital at Westmead, Westmead, New South Wales, Australia; Menzies Centre for Health Policy and Economics, the University of Sydney, Sydney, New South Wales, Australia.
⁸ Faculty of Health and Medical Sciences, University of Adelaide, Adelaide, South Australia, Australia; Central and Northern Adelaide Renal and Transplantation Service, Royal Adelaide Hospital, Adelaide, South Australia, Australia.
⁹ Australia and New Zealand Dialysis and Transplant Registry (ANZDATA), South Australian Health & Medical Research Institute (SAHMRI), Adelaide, South Australia, Australia; Faculty of Health and Medical Sciences, University of Adelaide, Adelaide, South Australia, Australia; Central and Northern Adelaide Renal and Transplantation Service, Royal Adelaide Hospital, Adelaide, South Australia, Australia.
¹⁰ Central Adelaide Local Health Network, Adelaide, South Australia, Australia.

PMID: 39922376
DOI: 10.1016/j.kint.2025.01.020

Identifying strategies for disseminating research to patients with chronic kidney disease and caregivers: a workshop report

Anastasia Hughes et al. Kidney Int. 2025 Jun.

. 2025 Jun;107(6):985-993.

doi: 10.1016/j.kint.2025.01.020. Epub 2025 Feb 6.

Authors

Collaborators

workshop investigators:
Amanda Sluite, Amandi Hiyare, Anastasia Hughes, Andrea Viecelli, Anita van Zwieten, Brydee Cashmore, Dale Coghlan, David J Tunnicliffe, Dominic Keuskamp, Ferzua Kholmurodova, Germaine Wong, Jasmin Mazis, Javier Recabarren, Karine Manera, Nicole Scholes-Robertson, Noa Amir, Pushparaj Velayudham, Rosanna Cazzolli, Yeoungjee Cho, Adela Yip, Alice Kennard, Allan Blackley, Allison Jaure, Amanda Dominello, Amber Williamson, Amy Luchterhand, Andrew Currey, Angela Rejuso, Anh Kieu, Anh Tho Tien, Annie Conway, Armando Teixeira-Pinto, Bill, Breonny Robson, Carmel Hawley, Chandana Guha, Dale Coghlan, Darling Rojas-Canales, David W Johnson, Dharmenaan Palamuthusingam, Dharshana Sabanayagam, Effie Johns, Erandi Hewawasam, Farzaneh Boroumand, Felicity Lord, Fiona Carlisle, Fleur Tuthill, Georgina Irish, Gorjana Radisic, Hayley Candler, Heather Shepherd, Henry Pleass, Ieyesha Roberts, Irene Mewburn, Isabelle Haklar, Janelle Colquhoun, Janet Kelly, Jill Brown, Jonathan C Craig, Joy Roberts, Kathy Strudwick, Kim Nguyen, Luca Torrisi, Madeleine Reicher, Madeleine Rapisardi, Martin Howell, Melissa Fernandez, Michael Collins, Natalie Brown, Nicky Boulter, Rachel Li, Richard Le Leu, Rick Rapana, Robert Dale, Sadia Jahan, Sally Spence, Samantha Bateman, Seethalakshmi Viswanathan, Shyamsundar Muthuramalingam, Siah Kim, Stephen McDonald, Verlencia En Ying Chu, Victoria Sinka, Vishal Diwan, Wendy Hoy

Affiliations

¹ School of Public Health, the University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, the Children's Hospital at Westmead, Westmead, New South Wales, Australia. Electronic address: anastasia.hughes@sydney.edu.au.
² School of Public Health, the University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, the Children's Hospital at Westmead, Westmead, New South Wales, Australia.
³ Flinders University, Bedford Park, South Australia, Australia.
⁴ Australasian Kidney Trials Network (AKTN), Faculty of Medicine, University of Queensland, Brisbane, Queensland, Australia.
⁵ Australasian Kidney Trials Network (AKTN), Faculty of Medicine, University of Queensland, Brisbane, Queensland, Australia; Department of Kidney and Transplant Services, Princess Alexandra Hospital, Brisbane, Queensland, Australia; Faculty of Medicine, the University of Queensland, Brisbane, Queensland, Australia.
⁶ Australia and New Zealand Dialysis and Transplant Registry (ANZDATA), South Australian Health & Medical Research Institute (SAHMRI), Adelaide, South Australia, Australia.
⁷ School of Public Health, the University of Sydney, Sydney, New South Wales, Australia; Centre for Kidney Research, the Children's Hospital at Westmead, Westmead, New South Wales, Australia; Menzies Centre for Health Policy and Economics, the University of Sydney, Sydney, New South Wales, Australia.
⁸ Faculty of Health and Medical Sciences, University of Adelaide, Adelaide, South Australia, Australia; Central and Northern Adelaide Renal and Transplantation Service, Royal Adelaide Hospital, Adelaide, South Australia, Australia.
⁹ Australia and New Zealand Dialysis and Transplant Registry (ANZDATA), South Australian Health & Medical Research Institute (SAHMRI), Adelaide, South Australia, Australia; Faculty of Health and Medical Sciences, University of Adelaide, Adelaide, South Australia, Australia; Central and Northern Adelaide Renal and Transplantation Service, Royal Adelaide Hospital, Adelaide, South Australia, Australia.
¹⁰ Central Adelaide Local Health Network, Adelaide, South Australia, Australia.

PMID: 39922376
DOI: 10.1016/j.kint.2025.01.020

Abstract

Health research results are primarily disseminated through scientific peer-reviewed journals and are not readily accessible to patients and caregivers, which can impede informed decision-making and limit the impact of research on patient outcomes. The aim of the workshop was to identify strategies to disseminate research in chronic kidney disease (CKD) to patients and caregivers. The workshop involved patients, caregivers (n = 27), and health professionals (n = 54) from Australia (10 breakout groups). The transcripts were thematically analyzed. Three themes (strategies) were identified. Generating interest encompassed emphasizing the benefits and impacts of research, using engaging modes of delivery, increasing visibility in clinical settings, and harnessing popular culture. Eliminating barriers to access included ensuring free access to journal articles, translating into different languages, providing plain-language summaries, considering convenience in the context of CKD-related burdens, and maximizing exposure. Demonstrating trustworthiness and repute entailed filtering for high-quality information and propagating through familiar networks and community-based channels. Ensuring ease of access to research, drawing attention, and prompting motivation to engage in research, and instilling confidence in patients about the quality of research may support effective dissemination. Adopting patient-prioritized models to increase translation of research may support shared decision-making in practice and improve care and patient outcomes.

Keywords: CKD; caregivers; consumers; dissemination; kidney disease; patients.

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Identifying strategies for disseminating research to patients with chronic kidney disease and caregivers: a workshop report

Collaborators

Affiliations

Identifying strategies for disseminating research to patients with chronic kidney disease and caregivers: a workshop report

Authors

Collaborators

Affiliations

Abstract

MeSH terms

LinkOut - more resources

Full Text Sources

Medical