Incorporating patients' views in guideline development: a systematic review of guidance documents

Anna Selva, Andrea Juliana Sanabria, Sandra Pequeño, Yuan Zhang, Ivan Solà, Héctor Pardo-Hernandez, Clara Selva, Holger Schünemann, Pablo Alonso-Coello

Research output: Contribution to journalArticleResearchpeer-review

31 Citations (Scopus)


© 2017 Elsevier Inc. Objectives To assess how guidance documents for developing clinical guidelines (CGs) address the incorporation of patients' views in CGs. Study Design and Setting Systematic review to identify the methodology provided in guidance documents for incorporating (1) patients or representatives and (2) patients' views in the CG development process. The search was performed in 2017 in five databases. Two authors selected the studies, and data extraction was double-checked. Results We included guidance documents from 56 institutions. Of those, 40 (71.4%) recommended the inclusion of patients or their representatives, mainly for developing recommendations (14/40, 35.0%); reviewing the final version (13/40, 32.5%); formulating clinical questions (13/40, 32.5%); defining the scope and objectives (10/40, 25.0%); and dissemination and implementation (10/40, 25.0%). Concrete methods on how to incorporate patients were provided by 47.5% (19/40) of institutions. Forty (71.4%) institutions provided additional strategies to incorporate patients' views. The majority (30/40, 75.0%) suggested sources for obtaining these views (consultation with patients [24/40, 60.0%], using panels' judgment [10/40, 25.0%], conducting de novo research [10/40, 25.0%], or a systematic review [9/40, 22.5%]). Conclusion Although most institutions suggest incorporating patients and their views when developing CGs, little detail is provided on how to do this. Institutions should provide more guidance as this could have a positive impact in guideline applicability.
Original languageEnglish
Pages (from-to)102-112
JournalJournal of Clinical Epidemiology
Publication statusPublished - 1 Aug 2017


  • Evidence-based medicine
  • Methods
  • Patient participation
  • Patient preference
  • Patient views
  • Practice guidelines


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