- Anneliese Synnot
- Naomi MacPherson, Thomas Benning, Bernard Tso, Chuyue Wang, Antonia Arfaras, Brian A. Beh, Vanessa Cullen, Jessica D'Lima, Tony Finneran, David C. Fry, Michelle King, Alexander Meredith, Adrian O'Malley, Joanne Muller, Tari Turner, Samantha P. Chakraborty
Correspondence: anneliese.synnot@monash.edu
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Abstract
Objectives
To examine the extent and nature of lived experience engagement in Australian clinical practice guideline development.
Study Design
Scoping review of Australian clinical practice guidelines published 1 January 2014–20 March 2025 that reported using a systematic search method and standardised methods for appraising evidence quality and certainty.
Data Sources
PubMed, Guidelines International Network library, Google Scholar, the websites of all 25 Australian medical colleges, the Cancer Council, the Heart Foundation, the Stroke Foundation, the National Blood Authority and Caring for Australians and New Zealanders with Kidney Impairment.
Data Synthesis
One hundred and fifty guidelines met the inclusion criteria; 108 (72%) reported some degree of lived experience engagement in their development, of which 98 (91%) described engagement through all development stages and 95 (88%) reported their inclusion as guideline panel members. Other methods of engagement included participation in lived experience panels and advisory groups (10 guidelines, 9%) and online surveys (5 guidelines, 5%). Ninety-seven of 108 guidelines (90%) with lived experience engagement reported that people with lived experience were asked to decide, advise or vote on recommendations or guideline content. One person with lived experience participated in the development process for 61 guidelines (56%), two people for 14 guidelines (13%), 3–10 people for 19 guidelines (18%) and more than 10 people for 10 guidelines (9%). Little information was reported about the characteristics of participating people with lived experience. Sixty guidelines (56%) reported remunerating people with lived experience for their participation, 49 guidelines (45%) reported that they received practical support and 41 guidelines (38%) reported that group dynamics were managed to support lived experience engagement.
Conclusions
It is encouraging that most Australian guidelines published during 2014–2025 reported at least some lived experience engagement in their development. However, extensive lived experience engagement was not reported for the vast majority of guidelines. The engagement of people with lived experience in guideline development needs to be improved to ensure that their values, views and preferences are reflected.