ArticleHealth expectations : an international journal of public participation in health care and health policy2020
Participation and consultation engagement strategies have complementary roles: A case study of patient and public involvement in clinical practice guideline development.
Article in Health expectations : an international journal of public participation in health care and health policy, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
21 citing papers in PubMed, 2 syntheses or guidelines pooled it, 30 citations in OpenAlex.
- Quality appraisal of clinical practice guidelines for fertility preservation in patients with breast cancer: a systematic review using AGREE II and AGREE-REX.Frontiers in medicine · 2026Pooled it
- Does patient and public involvement influence the development of competency frameworks for the health professions? A systematic review.Frontiers in medicine · 2022Pooled it
- Barriers and Facilitators to Interest-Holder Engagement in Health Guideline Development: A Qualitative Evidence Synthesis.Campbell systematic reviews · 2026Review
- The Extent and Nature of Lived Experience Engagement in the Development of Australian Clinical Practice Guidelines, 2014-2025: A Scoping Review.The Medical journal of Australia · 2026Article
- Participatory development of patient-targeted guideline material in palliative care: A qualitative evaluation.Palliative care and social practice · 2026Article
- Putting People at the Centre of Guidelines.Clinical and public health guidelines · 2026Article
- Community engagement in health guidelines and other normative products: a methodological review.Bulletin of the World Health Organization · 2025Review
- Methods for Involving People With Dementia in Health Policy and Guideline Development: A Scoping Review.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Contextualizing guidelines for the health system of Cyprus: Experiences and lessons learnt.Clinical and public health guidelines · 2025Article
- Guidance for engagement in health guideline development: A scoping review.Campbell systematic reviews · 2024Article
- Health professional involvement in the formulation of research questions: findings from the Italian guideline on palliative care in adults with glioma.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2023Article
- Patient and public involvement in the development of clinical practice guidelines: a scoping review.BMJ open · 2022Article
- Identifying current driver rehabilitation practices for clients with physical impairments.The British journal of occupational therapy · 2022Article
- Multiple stakeholders' perspectives on patient and public involvement in community mental health services research: A qualitative analysis.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Editorial: Competency frameworks in health professions education.Frontiers in medicine · 2022Article
- Evaluating the Acceptability, Feasibility, and Outcomes of Two Methods Involving Patients With Disability in Developing Clinical Guidelines: Crossover Pilot Study.Journal of participatory medicine · 2021Article
- Conceptualizing patient participation in psychiatry: A survey describing the voice of patients in outpatient care.Health expectations : an international journal of public participation in health care and health policy · 2021Article
- Clinical practice guidelines for the nutritional risk screening and assessment of cancer patients: a systematic quality appraisal using the AGREE II instrument.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2021Review
- Patient and Family Participation in Clinical Guidelines Development: The Cystic Fibrosis Foundation Experience.Journal of participatory medicine · 2020Article
- Participation and consultation engagement strategies have complementary roles: A case study of patient and public involvement in clinical practice guideline development.Health expectations : an international journal of public participation in health care and health policy · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 4 institutions in 2 countries.
Funding
Abstract
backgroundPatient and public involvement (PPI) is recommended when developing high-quality clinical practice guidelines, but the effects of different PPI strategies are largely unstudied.
objectiveTo assess the impact of participation and consultation strategies on guideline question development.
designInstrumental case study design. SETTING AND
participantsThis study used a clinical practice guideline in development by the American Academy of Neurology. A patient, two caregivers and a dementia advocate participated in the guideline development group alongside clinicians. The guideline protocol was posted for public consultation for 30 days. INTERVENTIONS STUDIED: Participation (patient representatives on the guideline development group) and consultation (public comment, survey) PPI strategies.
main outcome measuresPublic comment responses and guideline development group meeting transcripts were analysed descriptively. Transcript quotes were compared to the conceptual model of PPI in guideline development. The effects of participation and consultation strategies within the guideline case were compared.
resultsParticipation strategies shaped discussions, set a patient-centred scope, highlighted personal aspects of disease, affected how professionals viewed PPI, identified issues overlooked by medical professionals, and contributed to selecting patient-relevant guideline populations and outcomes. Professionals responded to public comment more than patient representatives. Patient survey participants confirmed the priorities voiced by patient representatives on the guideline development group. Final guideline questions included populations and outcomes promoted by patient representatives despite negative feedback from professional public commenters. DISCUSSION AND
conclusionsParticipation and consultation PPI strategies have different advantages. Congruence between strategies increases the strength of the patient voice. Guideline developers should prioritize using both strategies for successful PPI.
Indexed as
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.