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

## TL;DR

This study found that most Australian clinical guidelines involved people with lived experience, but engagement was often limited and lacked detailed reporting.

## Contribution

The study reveals that while lived experience engagement is common in Australian guidelines, it is often minimal and lacks comprehensive documentation.

## Key findings

- 72% of 150 guidelines included some lived experience engagement, with most involving participants in all stages.
- Only 9% used panels or advisory groups, and 5% used online surveys for engagement.
- Few guidelines provided details about participants' characteristics or how their input influenced recommendations.

## Abstract

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

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.

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.

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.

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.

The known: Involving people with lived experience of health conditions when developing clinical practice guidelines in Australia is required by the National Health and Medical Research Council.

The new: Most Australian guidelines published during 2014–2025 included people with lived experience throughout their development, but the degree of engagement was typically quite limited.

The implications: Increasing lived experience engagement in guideline development will better ensure that their values and preferences are appropriately considered.