TY - JOUR
T1 - Methods for living guidelines
T2 - early guidance based on practical experience. Paper 2: consumer engagement in living guidelines
AU - Synnot, Anneliese
AU - Hill, Kelvin
AU - Davey, Julie
AU - English, Kevin
AU - Whittle, Samuel L.
AU - Buchbinder, Rachelle
AU - May, Suzie
AU - White, Heath
AU - Meredith, Alexander
AU - Horton, Eleanor
AU - Randall, Rebecca
AU - Patel, Anneka
AU - O'Brien, Stella
AU - Turner, Tari
N1 - Funding Information:
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).
Funding Information:
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.
Publisher Copyright:
© 2023 Elsevier Inc.
PY - 2023/3
Y1 - 2023/3
N2 - 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.
AB - 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.
KW - Clinical practice guidelines
KW - Consumer engagement
KW - Coproduction
KW - Guidelines
KW - Living guidelines
KW - Patient involvement
UR - http://www.scopus.com/inward/record.url?scp=85147307142&partnerID=8YFLogxK
U2 - 10.1016/j.jclinepi.2022.12.020
DO - 10.1016/j.jclinepi.2022.12.020
M3 - Article
C2 - 36592876
AN - SCOPUS:85147307142
SN - 0895-4356
VL - 155
SP - 97
EP - 107
JO - Journal of Clinical Epidemiology
JF - Journal of Clinical Epidemiology
ER -