Principles and strategies for involving patients in research in chronic kidney disease: report from national workshops

Better Evidence and Translation in Chronic Kidney Disease (BEAT-CKD) Workshop Investigators , Talia Gutman, Allison Tong, Martin Howell, Kathryn Dansie, Carmel M Hawley, Jonathan C Craig, Shilpanjali Jesudason, Jeremy R Chapman, David W Johnson, Lisa Murphy, Donna Reidlinger, Sally Crowe, Emily Duncanson, Shyamsundar Muthuramalingam, Nicole Scholes-Robertson, Amber Williamson, Stephen McDonald

Research output: Contribution to journalArticle

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.

Cite this

@article{84795cf3b6fb4e80a8b112ca15c87731,
title = "Principles and strategies for involving patients in research in chronic kidney disease: report from national workshops",
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.",
author = "{Better Evidence and Translation in Chronic Kidney Disease (BEAT-CKD) Workshop Investigators} and Talia Gutman and Allison Tong and Martin Howell and Kathryn Dansie and Hawley, {Carmel M} and Craig, {Jonathan C} and Shilpanjali Jesudason and Chapman, {Jeremy R} and Johnson, {David W} and Lisa Murphy and Donna Reidlinger and Sally Crowe and Emily Duncanson and Shyamsundar Muthuramalingam and Nicole Scholes-Robertson and Amber Williamson and Stephen McDonald",
note = "{\circledC} The Author(s) 2019. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.",
year = "2019",
month = "5",
day = "15",
doi = "10.1093/ndt/gfz076",
language = "English",
journal = "Nephrology Dialysis Transplantation",
issn = "0931-0509",
publisher = "Oxford University Press",

}

TY - JOUR

T1 - Principles and strategies for involving patients in research in chronic kidney disease

T2 - Nephrology Dialysis Transplantation

AU - Better Evidence and Translation in Chronic Kidney Disease (BEAT-CKD) Workshop Investigators

AU - Gutman, Talia

AU - Tong, Allison

AU - Howell, Martin

AU - Dansie, Kathryn

AU - Hawley, Carmel M

AU - Craig, Jonathan C

AU - Jesudason, Shilpanjali

AU - Chapman, Jeremy R

AU - Johnson, David W

AU - Murphy, Lisa

AU - Reidlinger, Donna

AU - Crowe, Sally

AU - Duncanson, Emily

AU - Muthuramalingam, Shyamsundar

AU - Scholes-Robertson, Nicole

AU - Williamson, Amber

AU - McDonald, Stephen

N1 - © The Author(s) 2019. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.

PY - 2019/5/15

Y1 - 2019/5/15

N2 - 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.

AB - 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.

U2 - 10.1093/ndt/gfz076

DO - 10.1093/ndt/gfz076

M3 - Article

JO - Nephrology Dialysis Transplantation

JF - Nephrology Dialysis Transplantation

SN - 0931-0509

ER -