Evidence map›Paper›PMID 41626802›Full record

ArticleThe Medical journal of Australia2026

The Extent and Nature of Lived Experience Engagement in the Development of Australian Clinical Practice Guidelines, 2014-2025: A Scoping Review.

Anneliese Synnot, Naomi MacPherson, Thomas Benning, Bernard Tso, Chuyue Wang, Antonia Arfaras, Brian A Beh, Vanessa Cullen, Jessica D'Lima, Tony Finneran and 7 more

Abstract readScoping Review
PubMed Full text at PMC Publisher
In one paragraph

Article in The Medical journal of Australia, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

17 authors.

Anneliese SynnotSchool of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.ORCID 0000-0002-4008-4208
Naomi MacPhersonSchool of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.
Thomas BenningSchool of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.
Bernard TsoSchool of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.
Chuyue WangSchool of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.
Antonia ArfarasAustralian Living Evidence Collaboration Lived Experience Advisory Group, Monash University, Melbourne, Victoria, Australia.
Brian A BehAustralian Living Evidence Collaboration Lived Experience Advisory Group, Monash University, Melbourne, Victoria, Australia.
Vanessa CullenAustralian Living Evidence Collaboration Lived Experience Advisory Group, Monash University, Melbourne, Victoria, Australia.
Jessica D'LimaAustralian Living Evidence Collaboration Lived Experience Advisory Group, Monash University, Melbourne, Victoria, Australia.
Tony FinneranAustralian Living Evidence Collaboration Lived Experience Advisory Group, Monash University, Melbourne, Victoria, Australia.
David C FryAustralian Living Evidence Collaboration Lived Experience Advisory Group, Monash University, Melbourne, Victoria, Australia.
Michelle KingQueensland Aphasia Research Centre, University of Queensland, Brisbane, Queensland, Australia.
Alexander MeredithAustralian Living Evidence Collaboration Lived Experience Advisory Group, Monash University, Melbourne, Victoria, Australia.
Adrian O'MalleyAustralian Living Evidence Collaboration Lived Experience Advisory Group, Monash University, Melbourne, Victoria, Australia.
Joanne MullerAustralian Living Evidence Collaboration Lived Experience Advisory Group, Monash University, Melbourne, Victoria, Australia.
Tari TurnerSchool of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.
Samantha P ChakrabortyCochrane Australia, Monash University, Melbourne, Victoria, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectivesTo examine the extent and nature of lived experience engagement in Australian clinical practice guideline development. STUDY

designScoping 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.

conclusionsIt 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.

Indexed as

Practice Guidelines as TopicAustraliaHumansAustraliaguidelines as topiclived experience engagement

Identifiers

PMID41626802
PMCPMC12863021

What OpenQuestion holds

Textmetadata
LicenceCC BY
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.