ArticleHealth expectations : an international journal of public participation in health care and health policy2015
An empirical study of patient participation in guideline development: exploring the potential for articulating patient knowledge in evidence-based epistemic settings.
Article in Health expectations : an international journal of public participation in health care and health policy, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 43 papers, 2 of them syntheses that pooled it.
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Who cites it
43 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- The effectiveness and acceptability of evidence synthesis summary formats for clinical guideline development groups: a mixed-methods systematic review.Implementation science : IS · 2022Pooled it
- Inflammatory bowel disease (IBD) position statement of the Italian Society of Colorectal Surgery (SICCR): general principles of IBD management.Techniques in coloproctology · 2020Guideline
- 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
- Including patient experiences from online sources in guidelines: A natural language processing study on scabies.PloS one · 2026Article
- Community engagement in health guidelines and other normative products: a methodological review.Bulletin of the World Health Organization · 2025Review
- Patient Version of Guideline for Fibromyalgia (2025 Edition).Journal of evidence-based medicine · 2025Article
- '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
- Youth Care Stories: A Scoping Review Into What, Why and How Narrative Approaches Understand and Improve Quality of Care for Young People.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Guidance for engagement in health guideline development: A scoping review.Campbell systematic reviews · 2024Article
- Protocol: Assessing the impact of interest-holder engagement on guideline development: A systematic review.Campbell systematic reviews · 2024Article
- Clinical guidelines for herpes labialis: recommendations and quality evaluation according to AGREE II.Acta odontologica latinoamericana : AOL · 2024Review
- Evaluating patient participation in value-based healthcare: Current state and lessons learned.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Work-related support in clinical care for patients with a chronic disease: development of an intervention.Journal of occupational rehabilitation · 2022Review
- Reframing Patient Experience Approaches and Methods to Achieve Patient-Centeredness in Healthcare: Scoping Review.International journal of environmental research and public health · 2022Article
- PROTOCOL: Guidance for stakeholder engagement in guideline development: A systematic review.Campbell systematic reviews · 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
- Engaging citizens living in vulnerable circumstances in research: a narrative review using a systematic search.Research involvement and engagement · 2021Review
- What are the Relevant Outcomes of the Periodic Health Examination? A Comparison of Citizens' and Experts' Ratings.Patient preference and adherence · 2021Article
- Patient and Family Participation in Clinical Guidelines Development: The Cystic Fibrosis Foundation Experience.Journal of participatory medicine · 2020Article
Corrections and comments
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Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatient participation on both the individual and the collective level attracts broad attention from policy makers and researchers. Participation is expected to make decision making more democratic and increase the quality of decisions, but empirical evidence for this remains wanting.
objectiveTo study why problems arise in participation practice and to think critically about the consequence for future participation practices. We contribute to this discussion by looking at patient participation in guideline development.
methodsDutch guidelines (n = 62) were analysed using an extended version of the AGREE instrument. In addition, semi-structured interviews were conducted with actors involved in guideline development (n = 25).
resultsThe guidelines analysed generally scored low on the item of patient participation. The interviews provided us with important information on why this is the case. Although some respondents point out the added value of participation, many report on difficulties in the participation practice. Patient experiences sit uncomfortably with the EBM structure of guideline development. Moreover, patients who develop epistemic credibility needed to participate in evidence-based guideline development lose credibility as representatives for 'true' patients. DISCUSSION AND
conclusionsWe conclude that other options may increase the quality of care for patients by paying attention to their (individual) experiences. It will mean that patients are not present at every decision-making table in health care, which may produce a more elegant version of democratic patienthood; a version that neither produces tokenistic practices of direct participation nor that denies patients the chance to contribute to matters where this may be truly meaningful.
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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.