Patient and caregiver involvement in implementing health research in chronic kidney disease: A workshop report

Dale Coghlan; Allison Jaure; Anastasia Hughes; Rebecca Wu; Andrea K. Viecelli; Noa Amir; Hayley Candler; Brydee Cashmore; Yeoungjee Cho; Jonathan C. Craig; Rosanna Cazzolli; Chandana Guha; Carmel M. Hawley; Amandi Hiyare-Hewage; Martin Howell; Shilpanjali Jesudason; David W. Johnson; Dominic Keuskamp; Feruza Kholmurodova; Karine Manera; Jasmin Mazis; Stephen McDonald; Shyamsundar Muthuramalingam; Javier Recabarren Silva; Amanda Sluiter; Armando Teixeira-Pinto; David J. Tunnicliffe; Anita Van Zwieten; Pushparaj Velayudham; Germaine Wong; Nicole Scholes-Robertson; behalf of the workshop investigators; Darling Rojas-Canales; Gorjana Radisic; Janet Kelly

doi:10.1093/ckj/sfaf021

Patient and caregiver involvement in implementing health research in chronic kidney disease: A workshop report

Dale Coghlan, Allison Jaure, Anastasia Hughes, Rebecca Wu, Andrea K. Viecelli, Noa Amir, Hayley Candler, Brydee Cashmore, Yeoungjee Cho, Jonathan C. Craig, Rosanna Cazzolli, Chandana Guha, Carmel M. Hawley, Amandi Hiyare-Hewage, Martin Howell, Shilpanjali Jesudason, David W. Johnson, Dominic Keuskamp, Feruza Kholmurodova, Karine ManeraJasmin Mazis, Stephen McDonald, Shyamsundar Muthuramalingam, Javier Recabarren Silva, Amanda Sluiter, Armando Teixeira-Pinto, David J. Tunnicliffe, Anita Van Zwieten, Pushparaj Velayudham, Germaine Wong, Nicole Scholes-Robertson, behalf of the workshop investigators, Darling Rojas-Canales, Gorjana Radisic, Janet Kelly

College of Medicine and Public Health

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Abstract

To the Editor,

Patient and caregiver (consumer) involvement in research can strengthen the relevance and uptake of evidence. However, there is little guidance on how to involve consumers in the implementation of research in practice and policy. Existing frameworks suggest that consumers can contribute to implementation of research by providing input on the design and delivery of interventions to ensure acceptability in practice. Consumers can also contribute to strategies for implementing research, for example by identifying potential barriers and facilitators to adopting new treatments or providing feedback on implementing interventions through surveys or interviews. In the context of chronic kidney disease (CKD), there is little documented on consumer involvement in the implementation of research. The aim of this workshop was to identify ways to involve patients and caregivers in the implementation of research in CKD...

Original language	English
Article number	sfaf021
Number of pages	5
Journal	Clinical Kidney Journal
Volume	18
Issue number	3
DOIs	https://doi.org/10.1093/ckj/sfaf021
Publication status	Published - Mar 2025

Keywords

Medical research
Kidney disease
Implementation
Patient involvement
Caregiver involvement

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1093/ckj/sfaf021Licence: CC BY

Final published versionFinal published version, 444 KBLicence: CC BY

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Coghlan, D., Jaure, A., Hughes, A., Wu, R., Viecelli, A. K., Amir, N., Candler, H., Cashmore, B., Cho, Y., Craig, J. C., Cazzolli, R., Guha, C., Hawley, C. M., Hiyare-Hewage, A., Howell, M., Jesudason, S., Johnson, D. W., Keuskamp, D., Kholmurodova, F., ... Kelly, J. (2025). Patient and caregiver involvement in implementing health research in chronic kidney disease: A workshop report. Clinical Kidney Journal, 18(3), Article sfaf021. https://doi.org/10.1093/ckj/sfaf021

@article{67c6546630b04456b8df94f3fbd1b95c,

title = "Patient and caregiver involvement in implementing health research in chronic kidney disease: A workshop report",

abstract = "To the Editor,Patient and caregiver (consumer) involvement in research can strengthen the relevance and uptake of evidence. However, there is little guidance on how to involve consumers in the implementation of research in practice and policy. Existing frameworks suggest that consumers can contribute to implementation of research by providing input on the design and delivery of interventions to ensure acceptability in practice. Consumers can also contribute to strategies for implementing research, for example by identifying potential barriers and facilitators to adopting new treatments or providing feedback on implementing interventions through surveys or interviews. In the context of chronic kidney disease (CKD), there is little documented on consumer involvement in the implementation of research. The aim of this workshop was to identify ways to involve patients and caregivers in the implementation of research in CKD...",

keywords = "Medical research, Kidney disease, Implementation, Patient involvement, Caregiver involvement",

author = "Dale Coghlan and Allison Jaure and Anastasia Hughes and Rebecca Wu and Viecelli, {Andrea K.} and Noa Amir and Hayley Candler and Brydee Cashmore and Yeoungjee Cho and Craig, {Jonathan C.} and Rosanna Cazzolli and Chandana Guha and Hawley, {Carmel M.} and Amandi Hiyare-Hewage and Martin Howell and Shilpanjali Jesudason and Johnson, {David W.} and Dominic Keuskamp and Feruza Kholmurodova and Karine Manera and Jasmin Mazis and Stephen McDonald and Shyamsundar Muthuramalingam and Silva, {Javier Recabarren} and Amanda Sluiter and Armando Teixeira-Pinto and Tunnicliffe, {David J.} and {Van Zwieten}, Anita and Pushparaj Velayudham and Germaine Wong and Nicole Scholes-Robertson and {behalf of the workshop investigators} and Adela Yip and Alice Kennard and Allan Blackley and Amanda Dominello and Amandi Hiyare and Amber Williamson and Amy Luchterhand and Andrew Currey and Angela Rejuso and Anh Kieu and Tien, {Anh Tho} and Annie Conway and Breonny Robson and Clarissa Hompas and Darling Rojas-Canales and Effie Johns and Erandi Hewawasam and Felicity Lord and Fiona Carlisle and Fleur Tuthill and Gorjana Radisic and Heather Shepherd and Helen Coolican and Henry Pleass and Ieyesha Roberts and Irene Mewburn and Isabelle Haklar and Janelle Colquhoun and Janet Kelly and Javier Recabarren and Jill Brown and Joy Roberts and Kathy Strudwick and Kim Nguyen and Luca Torrisi and Madeleine Parker and Madeleine Rapisardi and Michael Collins and Natalie Brown and Nicky Boulter and Rachel Li and Leu, {Richard Le} and Rick Rapana and Robert Dale and Sadia Jahn and Sally Spence and Seethalakshmi Viswanathan and {En Ying Chu}, Verlencia and Victoria Sinka and Vishal Diwan and Wendy Hoy",

year = "2025",

month = mar,

doi = "10.1093/ckj/sfaf021",

language = "English",

volume = "18",

journal = "Clinical Kidney Journal",

issn = "2048-8505",

publisher = "Oxford University Press",

number = "3",

}

Coghlan, D, Jaure, A, Hughes, A, Wu, R, Viecelli, AK, Amir, N, Candler, H, Cashmore, B, Cho, Y, Craig, JC, Cazzolli, R, Guha, C, Hawley, CM, Hiyare-Hewage, A, Howell, M, Jesudason, S, Johnson, DW, Keuskamp, D, Kholmurodova, F, Manera, K, Mazis, J, McDonald, S, Muthuramalingam, S, Silva, JR, Sluiter, A, Teixeira-Pinto, A, Tunnicliffe, DJ, Van Zwieten, A, Velayudham, P, Wong, G, Scholes-Robertson, N, behalf of the workshop investigators, Rojas-Canales, D, Radisic, G & Kelly, J 2025, 'Patient and caregiver involvement in implementing health research in chronic kidney disease: A workshop report', Clinical Kidney Journal, vol. 18, no. 3, sfaf021. https://doi.org/10.1093/ckj/sfaf021

TY - JOUR

T1 - Patient and caregiver involvement in implementing health research in chronic kidney disease

T2 - A workshop report

AU - Coghlan, Dale

AU - Jaure, Allison

AU - Hughes, Anastasia

AU - Wu, Rebecca

AU - Viecelli, Andrea K.

AU - Amir, Noa

AU - Candler, Hayley

AU - Cashmore, Brydee

AU - Cho, Yeoungjee

AU - Craig, Jonathan C.

AU - Cazzolli, Rosanna

AU - Guha, Chandana

AU - Hawley, Carmel M.

AU - Hiyare-Hewage, Amandi

AU - Howell, Martin

AU - Jesudason, Shilpanjali

AU - Johnson, David W.

AU - Keuskamp, Dominic

AU - Kholmurodova, Feruza

AU - Manera, Karine

AU - Mazis, Jasmin

AU - McDonald, Stephen

AU - Muthuramalingam, Shyamsundar

AU - Silva, Javier Recabarren

AU - Sluiter, Amanda

AU - Teixeira-Pinto, Armando

AU - Tunnicliffe, David J.

AU - Van Zwieten, Anita

AU - Velayudham, Pushparaj

AU - Wong, Germaine

AU - Scholes-Robertson, Nicole

AU - behalf of the workshop investigators

AU - Yip, Adela

AU - Kennard, Alice

AU - Blackley, Allan

AU - Dominello, Amanda

AU - Hiyare, Amandi

AU - Williamson, Amber

AU - Luchterhand, Amy

AU - Currey, Andrew

AU - Rejuso, Angela

AU - Kieu, Anh

AU - Tien, Anh Tho

AU - Conway, Annie

AU - Robson, Breonny

AU - Hompas, Clarissa

AU - Rojas-Canales, Darling

AU - Johns, Effie

AU - Hewawasam, Erandi

AU - Lord, Felicity

AU - Carlisle, Fiona

AU - Tuthill, Fleur

AU - Radisic, Gorjana

AU - Shepherd, Heather

AU - Coolican, Helen

AU - Pleass, Henry

AU - Roberts, Ieyesha

AU - Mewburn, Irene

AU - Haklar, Isabelle

AU - Colquhoun, Janelle

AU - Kelly, Janet

AU - Recabarren, Javier

AU - Brown, Jill

AU - Roberts, Joy

AU - Strudwick, Kathy

AU - Nguyen, Kim

AU - Torrisi, Luca

AU - Parker, Madeleine

AU - Rapisardi, Madeleine

AU - Collins, Michael

AU - Brown, Natalie

AU - Boulter, Nicky

AU - Li, Rachel

AU - Leu, Richard Le

AU - Rapana, Rick

AU - Dale, Robert

AU - Jahn, Sadia

AU - Spence, Sally

AU - Viswanathan, Seethalakshmi

AU - En Ying Chu, Verlencia

AU - Sinka, Victoria

AU - Diwan, Vishal

AU - Hoy, Wendy

PY - 2025/3

Y1 - 2025/3

N2 - To the Editor,Patient and caregiver (consumer) involvement in research can strengthen the relevance and uptake of evidence. However, there is little guidance on how to involve consumers in the implementation of research in practice and policy. Existing frameworks suggest that consumers can contribute to implementation of research by providing input on the design and delivery of interventions to ensure acceptability in practice. Consumers can also contribute to strategies for implementing research, for example by identifying potential barriers and facilitators to adopting new treatments or providing feedback on implementing interventions through surveys or interviews. In the context of chronic kidney disease (CKD), there is little documented on consumer involvement in the implementation of research. The aim of this workshop was to identify ways to involve patients and caregivers in the implementation of research in CKD...

AB - To the Editor,Patient and caregiver (consumer) involvement in research can strengthen the relevance and uptake of evidence. However, there is little guidance on how to involve consumers in the implementation of research in practice and policy. Existing frameworks suggest that consumers can contribute to implementation of research by providing input on the design and delivery of interventions to ensure acceptability in practice. Consumers can also contribute to strategies for implementing research, for example by identifying potential barriers and facilitators to adopting new treatments or providing feedback on implementing interventions through surveys or interviews. In the context of chronic kidney disease (CKD), there is little documented on consumer involvement in the implementation of research. The aim of this workshop was to identify ways to involve patients and caregivers in the implementation of research in CKD...

KW - Medical research

KW - Kidney disease

KW - Implementation

KW - Patient involvement

KW - Caregiver involvement

UR - http://www.scopus.com/inward/record.url?scp=105000214915&partnerID=8YFLogxK

UR - http://purl.org/au-research/grants/NHMRC/207026

UR - http://purl.org/au-research/grants/NHMRC/1173941

U2 - 10.1093/ckj/sfaf021

DO - 10.1093/ckj/sfaf021

M3 - Letter

AN - SCOPUS:105000214915

SN - 2048-8505

VL - 18

JO - Clinical Kidney Journal

JF - Clinical Kidney Journal

IS - 3

M1 - sfaf021

ER -

Patient and caregiver involvement in implementing health research in chronic kidney disease: A workshop report

Abstract

Keywords

UN SDGs

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