Development of the Consumer Involvement & Engagement Toolkit: a digital resource to build capacity for undertaking patient-centred clinical trials in Australia.


Journal

Public health research & practice
ISSN: 2204-2091
Titre abrégé: Public Health Res Pract
Pays: Australia
ID NLM: 101648133

Informations de publication

Date de publication:
15 Mar 2023
Historique:
pubmed: 7 6 2022
medline: 17 3 2023
entrez: 6 6 2022
Statut: epublish

Résumé

This manuscript describes the novel approach to developing a toolkit to support meaningful consumer involvement in clinical trials in Australia to help guide others in considering the development of similar resources.The toolkit aims to support greater consumer involvement in shaping how clinical research is prioritised, designed and conducted. Type of program or service: A working group of researchers, research organisations and consumers was established to co-develop the Consumer Involvement and Engagement Toolkit (the 'Toolkit'), a digital resource to guide researchers and organisations regarding consumer involvement in clinical trials. A literature review and international scan of best practice revealed numerous resources outlining best practice for consumer involvement in clinical research and clear evidence of its impact and value. Through a novel content-sharing process, we were able to utilise these resources to develop a comprehensive Toolkit for researchers and research organisations that provides world-class guidance. There is a growing movement to ensure consumer involvement in healthcare, including in clinical research. We discovered its proponents were willing to share their tools and resources to promote international consumer involvement. Although these international tools and resources needed adaptation to suit the Australian research environment, this was achievable with far less effort than developing them from scratch.

Identifiants

pubmed: 35661863
pii: 32122209
doi: 10.17061/phrp32122209
doi:
pii:

Types de publication

Review Journal Article

Langues

eng

Sous-ensembles de citation

IM

Déclaration de conflit d'intérêts

None declared.

Auteurs

Tanya Symons (T)

University of Sydney, NSW, Australia.

Janelle Bowden (J)

AccessCR Pty Ltd, Sydney, NSW, Australia.

Anne McKenzie (A)

Telethon Kids Institute, Perth, Western Australia.

Julia M Fallon-Ferguson (JM)

School of Population Health, Curtin University, Perth, Western Australia.

Leanne Y Weekes (LY)

Clinical Trials: Impact & Quality (CT:IQ), Melbourne, VIC, Australia.

James Ansell (J)

Consumer Health Forum of Australia, Canberra, ACT.

Rinki Murphy (R)

Faculty of Medical and Health Science, University of Auckland, New Zealand.

Shilpa Jesudason (S)

Royal Adelaide Hospital, South Australia.

Manoj Saxena (M)

Bankstown Hospital, South Western Sydney Local Health District, NSW, Australia.

Alistair Nichol (A)

Australian and New Zealand Intensive Care Research Centre, Monash University, Melbourne, VIC, Australia; University College Dublin Clinical Research Centre, St Vincents University Hospital, Dublin, Ireland.

Nicola Straiton (N)

Australian Clinical Trials Alliance, Melbourne, VIC, Australia Clinical Research Centre, St Vincents University Hospital;nstr4913@uni.sydney.edu.au.

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