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

Australia / epidemiology Biomedical Research / organization & administration Female Humans Male Patient Participation / statistics & numerical data Renal Insufficiency, Chronic / epidemiology Research Design / standards
consumer engagement consumer involvement patient engagement patient involvement patient research partner

Journal

Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association
ISSN: 1460-2385
Titre abrégé: Nephrol Dial Transplant
Pays: England
ID NLM: 8706402

Informations de publication

Date de publication:
01 09 2020
Historique:
received: 17 12 2018
accepted: 15 03 2019
pubmed: 17 5 2019
medline: 4 2 2021
entrez: 17 5 2019
Statut: ppublish

Résumé

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. 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. 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. 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.

Sections du résumé

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.

Identifiants

DOI: 10.1093/ndt/gfz076 PMID: 31093667
pubmed: 31093667
pii: 5489809
doi: 10.1093/ndt/gfz076
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

1585-1594

Informations de copyright

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

Auteurs

Talia Gutman (T)

Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW, Australia.

Allison Tong (A)

Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW, Australia.

Martin Howell (M)

Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW, Australia.

Kathryn Dansie (K)

Australia and New Zealand Dialysis and Transplant Registry, SA Health and Medical Research Institute, Adelaide, SA, Australia.

Carmel M Hawley (CM)

Australasian Kidney Trials Network, Brisbane, QLD, Australia.
Faculty of Medicine, University of Queensland, Brisbane, QLD, Australia.
Department of Nephrology, Princess Alexandra Hospital, Brisbane, QLD, Australia.

Jonathan C Craig (JC)

Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW, Australia.
College of Medicine and Public Health, Flinders University, Bedford Park, SA, Australia.

Shilpanjali Jesudason (S)

Central and Northern Adelaide Renal and Transplantation Service and Royal Adelaide Hospital, Adelaide, SA, Australia.
Kidney Health Australia, Melbourne, SA, Australia.
Faculty of Health and Medical Sciences, University of Adelaide, Adelaide, SA, Australia.

Jeremy R Chapman (JR)

Westmead Clinical School, Westmead Institute for Medical Research, NSW, Australia.

David W Johnson (DW)

Australasian Kidney Trials Network, Brisbane, QLD, Australia.
Faculty of Medicine, University of Queensland, Brisbane, QLD, Australia.
Department of Nephrology, Princess Alexandra Hospital, Brisbane, QLD, Australia.

Lisa Murphy (L)

Kidney Health Australia, Melbourne, SA, Australia.

Donna Reidlinger (D)

Australasian Kidney Trials Network, Brisbane, QLD, Australia.
Faculty of Medicine, University of Queensland, Brisbane, QLD, Australia.

Sally Crowe (S)

Crowe Associates, London, UK.

Emily Duncanson (E)

Australia and New Zealand Dialysis and Transplant Registry, SA Health and Medical Research Institute, Adelaide, SA, Australia.

Shyamsundar Muthuramalingam (S)

BEAT-CKD Consumer Advisory Board, BEAT-CKD, SA, Australia.

Nicole Scholes-Robertson (N)

Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW, Australia.
BEAT-CKD Consumer Advisory Board, BEAT-CKD, SA, Australia.

Amber Williamson (A)

BEAT-CKD Consumer Advisory Board, BEAT-CKD, SA, Australia.
Queensland Consumer Consultative Committee, Kidney Health Australia, Brisbane, QLD, Australia.

Stephen McDonald (S)

Australia and New Zealand Dialysis and Transplant Registry, SA Health and Medical Research Institute, Adelaide, SA, Australia.
College of Medicine and Public Health, Flinders University, Bedford Park, SA, Australia.
Faculty of Health and Medical Sciences, University of Adelaide, Adelaide, SA, Australia.

Articles similaires

[Redispensing of expensive oral anticancer medicines: a practical application].

Lisanne N van Merendonk, Kübra Akgöl, Bastiaan Nuijen
1.00
Humans Antineoplastic Agents Administration, Oral Drug Costs Counterfeit Drugs

Smoking Cessation and Incident Cardiovascular Disease.

Jun Hwan Cho, Seung Yong Shin, Hoseob Kim et al.
1.00
Humans Male Smoking Cessation Cardiovascular Diseases Female

Evaluation of Low-Value Services Across Major Medicare Advantage Insurers and Traditional Medicare.

Ciara Duggan, Adam L Beckman, Ishani Ganguli et al.
1.00
Humans United States Aged Cross-Sectional Studies Medicare Part C

Effectiveness of Virtual Yoga for Chronic Low Back Pain: A Randomized Clinical Trial.

Hallie Tankha, Devyn Gaskins, Amanda Shallcross et al.
1.00
Humans Yoga Low Back Pain Female Male

Classifications MeSH

questionsmedicales.fr › Régions géographiques › Océanie › Australasie › Australie › Principles and strategies for involving...
questionsmedicales.fr › Disciplines des sciences naturelles › Science › Recherche › Recherche biomédicale › Principles and strategies for involving...
questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › Principles and strategies for involving...
questionsmedicales.fr › Qualité, accès, évaluation des soins de santé › Prestations des soins de santé › Attitude envers la santé › Adhésion et observance thérapeutiques › Acceptation des soins par les patients › Participation des patients › Principles and strategies for involving...
questionsmedicales.fr › États, signes et symptômes pathologiques › Processus pathologiques › Caractéristiques de la maladie › Maladie chronique › Insuffisance rénale chronique › Principles and strategies for involving...
questionsmedicales.fr › Disciplines des sciences naturelles › Science › Recherche › Plan de recherche › Principles and strategies for involving...