ArticleBMC health services research2022
Enhancing patient and public contribution in health outcome selection during clinical guideline development: an ethnographic study.
Article in BMC health services research, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
8 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Evidence-based clinical practice guidelines for the management of acute ankle injuries according to: a PRISMA systematic review and quality appraisal with AGREE II.BMC musculoskeletal disorders · 2024Pooled it
- Barriers and Facilitators to Interest-Holder Engagement in Health Guideline Development: A Qualitative Evidence Synthesis.Campbell systematic reviews · 2026Review
- Putting People at the Centre of Guidelines.Clinical and public health guidelines · 2026Article
- Validation of a method for synthesizing public consultations to inform decision-making in health technology assessment (HTA) in Brazil: a Delphi consensus.BMC health services research · 2025Article
- Community engagement in health guidelines and other normative products: a methodological review.Bulletin of the World Health Organization · 2025Review
- 'We are the engine': a focus group study on clinical practice guideline development with European patient advocates for rare congenital malformations and/or intellectual disability.Orphanet journal of rare diseases · 2025Article
- Unravelling Education Needs for Clinical Practice Guideline Development: A Survey Performed in the Netherlands.Journal of evaluation in clinical practice · 2025Article
- [Participation of Patients in the Development of Clinical Guidelines: A Selective Country Comparison in a Narrative Review].Gesundheitswesen (Bundesverband der Arzte des Offentlichen Gesundheitsdienstes (Germany)) · 2023Review
Corrections and comments
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Authors and funding
5 authors.
Funding
Abstract
backgroundPatient and public involvement (PPI) is a cornerstone in enhancing healthcare research and delivery, including clinical guideline development. Health outcomes concern changes in the health status of an individual or population that are attributable to an intervention. Discussion of relevant health outcomes impacts the resulting clinical guidelines for practice. This study explores how the input of PPI contributors at the National Institute of Health and Care Excellence (NICE) is integrated into guideline development, particularly in relation to health outcome selection.
methodsThe study used an ethnographic methodological approach. Data comprised: observations of committee meetings, scoping workshops and training sessions, and in-depth interviews with PPI contributors, health professionals and chairs from clinical guideline development committees. Data were analysed thematically.
resultsPPI contributors' input in the guideline development process was often of limited scope, particularly in selecting health outcomes. Key constraints on their input included: the technical content and language of guidelines, assumed differences in the health-related priorities between PPI contributors and health professionals, and the linear timeline of the guideline development process. However, PPI contributors can influence clinical guideline development including the selection of relevant health outcomes. This was achieved through several factors and highlights the important role of the committee chair, the importance of training and support for all committee members, the use of plain language and the opportunity for all committee members to engage.
conclusionsLay member input during the outcome selection phase of clinical guideline development is achievable, but there are challenges to overcome. Study findings identify ways that future guideline developers can support meaningful lay involvement in guideline development and health outcome selection.
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