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The experiences and perceptions of guideline developers and people with lived experience working together to create
Anneliese Synnot1, Tari Turner2, Samantha Chakraborty2
1School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia; Centre for Health Communication and Participation, Department of Public Health, La Trobe University, Melbourne, Australia.
Objectives:
People with lived experience are increasingly involved in guideline development. There is limited research about the experiences of lived experience engagement in guideline development from the perspective of guideline developers and people with lived experience. The aim of this study was to explore the experiences and perspectives of people with lived experience and guideline developers about lived experience engagement in Australian guidelines.
Methods:
Participants included guideline developers and people with lived experience who had developed (or contributed to the development of) an Australian guideline in the last 5 years. We conducted 15-30-minute online interviews and one 50-minute online focus group, with an inductive thematic analysis of the data.
Results:
Fifteen guideline developers and 22 people with lived experience participated. We found that many people in both participant groups described positive experiences with engagement, with few weaknesses. Guideline developers described how helpful it was to have an established practice of consumer engagement and the support of colleagues to draw upon. Some people with lived experience described receiving insufficient support (eg, lack of orientation) to participate in the guideline development process. Both participant groups wanted more people with lived experience involved in the development of guidelines and greater diversity in contributors. The need for adequate funding and resources was highlighted by guideline developers and the importance of remuneration was emphasized by both groups. Both participant groups advocated for having separate meetings with only people with lived experience. Guideline developers who had not involved people with lived experience wanted to do so in the future.
Conclusion:
Australian guideline developers and people with lived experience report many positive experiences working together on guidelines and identified some areas for improvement. Lived experience engagement would be improved by guideline developers being able to access sufficient funding and resources for engagement.
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