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An empirical study of patient participation in guideline development: exploring the potential for articulating patient knowledge in evidence-based epistemic settings
Erasmus University Rotterdam.
Erasmus University Rotterdam.ORCID iD: 0000-0003-3008-1297
2015 (English)In: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625, Vol. 18, no 5, 942-955 p.Article in journal (Refereed) Published
Abstract [en]

Background Patient 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 empiri- cal evidence for this remains wanting.

Objective To study why problems arise in participation practice and to think critically about the consequence for future participa- tion practices. We contribute to this discussion by looking at patient participation in guideline development.

Methods Dutch guidelines (n = 62) were analysed extended version of the AGREE instrument. In addition, semi- structured interviews were conducted with actors involved in guideline development (n = 25).

Results The 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 diffi- culties in the participation practice. Patient experiences sit uncom- fortably 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 conclusions We 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 ver- sion that neither produces tokenistic practices of direct participa- tion nor that denies patients the chance to contribute to matters where this may be truly meaningful. 

Place, publisher, year, edition, pages
2015. Vol. 18, no 5, 942-955 p.
Keyword [en]
guideline development, patient participation, patient-centered care
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
URN: urn:nbn:se:liu:diva-122262DOI: 10.1111/hex.12067PubMedID: 23634973OAI: diva2:864304
Available from: 2015-10-26 Created: 2015-10-26 Last updated: 2015-11-19

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