Expectations regarding lived experience engagement in health research have shifted considerably in recent years. A 2014 analysis of Australian guidelines, undertaken prior to the publication of the first NHMRC guideline standards, found that 14% reported lived experience engagement in their development. Lived experience engagement in Australian guideline development had not since been thoroughly investigated, until now.
Our scoping review included 150 guidelines published during 2014–2025. We found that 108 guidelines reported involving people with lived experience in their development. 91% reported lived experience engagement throughout guideline development, primarily as guideline panel members. While lived experience engagement in Australian guideline development is increasing, it typically consists of only one or two people as members of guideline development groups.
In terms of supporting people with lived experience, the most frequently reported was that of remuneration (56%), with practical support, management of group dynamics, informal support, co-learning and training also being of note.
Levels of engagement were measured in accordance with the definitions from the International Association for Public Participation Australasia, of ‘collaborate’, ‘involve’ ‘consult’ and ‘empower’, with most, but not all, guidelines falling into the ‘collaborate’ category.
Eight guidelines were found to have extensive engagement with people with lived experience. Guideline developers may benefit from our findings in assessing their lived experience engagement activities and to identify areas of improvement. Our analysis, as well as the many references to recruitment, engagement and support within all 108 guidelines, can provide developers with tools, ideas and effective methods they can integrate into their own guideline development processes.
Read the scoping review in the MJA
Find out more about the ALEC Lived Experience Advisory Group
