Background: Several organizations are advocating for patients’ preferences to be considered in clinical practice guideline development and implementation. However, lack of agreement on the goal and meaning of this policy curtails evaluation and development of patient involvement programs.
Goal: To describe guideline developers’ discourses on the goal of considering patients’ preferences.
Method: Design: Qualitative study using discourse analysis. Subjects:18 participants (patients, health professionals, and public health experts) from 2 groups of British guideline developers. Data collection and analysis: Template analysis of semi-structured individual interviews was strengthened by active search for deviant cases, team debriefing, and member checking.
Results: All respondents supported the idea of taking account of patients’ preferences in guidelines. Divergences with the goal and meaning of considering preferences were structured in 4 discourses: (1) The Governance discourse constructs guideline development as a rational process of synthesizing population data–including evidence on patients’ preferences–to maximize public health within the constraints of available resources; (2) the Informed Decision discourse aims at fostering patients’ choice by providing tailored information on the risks and benefits of interventions; (3) the Professional Care discourse insists on basing professionals’ recommendations on the individual characteristics of patients; (4) The Consumer Advocacy discourse argues for greater political power and influence over guideline development and clinical decision making.
Conclusions: The identified discourses provide a set of hypothesis on how patient involvement programs are expected to work, which could help clarify the goals pursued by guideline organizations and anchor further evaluation efforts.
From the *Scientific Institute for Quality of Healthcare, Radboud University Nijmegen Medical Centre, The Netherlands; †Health Services Research Unit, London School of Hygiene and Tropical Medicine, London, United Kingdom; and ‡Department of Family Medicine, Université Laval, Québec, Canada.
Supported by a fellowship from the Canadian Institutes of Health Research (TUTOR-PHC program) (to A.B.) and also by a Career Scientist Award from the National Institute for Health Research (to E.N.).
Julia Sohi reviewed the article for important intellectual content.
A.B. developed the original research question and design; recruited subjects, conducted and analysed the interviews and drafted the article. J.G., E.N., and J.v.M. contributed to the refinement of the research question and design of the study. J.G. validated the analysis. J.v.M. facilitated the recruitment of subjects and moderated one of the guideline development group meeting. FL is Canada Research Chair in Implementation of Shared Decision Making in Primary Care. All authors contributed to the interpretation of findings, reviewed the article critically for important intellectual content and approved its final version for submission.
Reprints: Antoine Boivin, MD, MSc, CCFP, Scientific Institute for Quality of Healthcare, Radboud University Nijmegen Medical Centre, P.O. Box 9101, 114 IQ healthcare, 6500 HB Nijmegen, Netherlands. E-mail: email@example.com.