Highlights
- •Consumer engagement in living guidelines builds upon best practice in engagement.
- •Larger groups of consumers can mitigate workload challenges.
- •Guideline developers must pay continual attention to consumer turnover and support.
- •Living consumer engagement means the approach can grow and improve over time.
- •Improvements should be informed by living evaluation.
Abstract
Objectives
To describe and reflect on the consumer engagement approaches used in five living
guidelines from the perspectives of consumers (i.e., patients, carers, the public,
and their representatives) and guideline developers.
Study Design and Setting
In a descriptive report, we used a template to capture engagement approaches and the
experiences of consumers and guideline developers in living guidelines in Australia
and the United Kingdom. Responses were summarized using descriptive synthesis.
Results
One guideline used a Consumer Panel, three included two to three consumers in the
guideline development group, and one did both. Much of our experience was common to
all guidelines (e.g., consumers felt welcomed but that their role initially lacked
clarity). We identified six challenges and opportunities specific to living guidelines:
managing the flow of work; managing engagement in online environments; managing membership
of the panel; facilitating more flexibility, variety and depth in engagement; recruiting
for specific skills–although these can be built over time; developing living processes
to improve; and adapting consumer engagement together.
Conclusion
Consumer engagement in living guidelines should follow established principles of consumer
engagement in guidelines. Conceiving the engagement as living, underpinned by a living
process evaluation, allows the approach to be developed with consumers over time.
Keywords
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Article info
Publication history
Published online: December 30, 2022
Accepted:
December 21,
2022
Publication stage
In Press Journal Pre-ProofFootnotes
Funding: This article was not externally funded. Funding for the five living guidelines is outlined below. The National COVID-19 Clinical Evidence Taskforce is supported by Australian Government Department of Health, Victorian Government Department of Health and Human Services, The Ian Potter Foundation, Walter Cottman Endowment Fund (managed by Equity Trustees), and Lord Mayors’ Charitable Foundation. The National Institute for Health and Care Excellence receives funding from the Department of Health and Social Care in England. The stroke guideline was funded by the Australian Government through the Medical Research Future Fund during a 3-year establishment project (2018–2021). The guidelines are currently supported internally by the Stroke Foundation. The Australian Evidence-Based Clinical Guidelines for Diabetes is supported by Australian Diabetes Society, Diabetes Australia, Australian Diabetes Educators Association, Australasian Pediatric Endocrine Group, and the Australian Government Department of Health. The Australian Living Guideline for the Pharmacological Management of Inflammatory Arthritis is supported by the Australian Government's Value in prescribing program grant, managed by the Targeted Therapies Alliance, a consortium coordinated by NPS MedicineWise. SW is supported by an Australia and New Zealand Musculoskeletal Clinical Trial Network Practitioner Fellowship and RB is supported by an Australian National Health and Medical Research Council (NHMRC) Investigator Fellowship (APP1194483).
Declaration of interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this article.
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