Why Consider Patients’ Preferences

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. 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

Debriefing · Guideline · Health care · Meaning (existential) · Medical education · Political science · Population · Psychological intervention · Public relations · Qualitative research · Set (abstract data type) · Sociology · Clinical practice guidelines implementation · Computer Science · Medicine · Mental Health and Patient Involvement · Nursing · Patient-Provider Communication in Healthcare · Psychology

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  Añadir item

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  Open Access•C A C M Pittens, Antonie Vonk Noordegraaf et al.•Health Expectations•2015

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  Open Access•A Jaure, Allison Tong et al.•Health Expectations•2012

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  Open Access•Sara Ryan, Jenny Hislop et al.•Health Expectations•2017

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  Open Access•Hester Van De Bovenkamp, Hester M Van De Bovenkamp et al.•Health Expectations•2015

  Añadir item

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  Open Access•Jeremy M Grimshaw, J Grimshaw et al.•Health Technology Assessment•2004

  Añadir item

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  Open Access•Angela Coulter, JO ELLINS•BMJ•2007

  Añadir item

• Evidence based medicine

  Open Access•David L Sackett, William Rosenberg et al.•BMJ•1996

  Añadir item

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  John Green, Nicki Thorogood•Choice Reviews Online•2009

  Añadir item

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  Open Access•Raisa B Deber, Raisa Deber et al.•Health Expectations•2007

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  Open Access•Gene Rowe, Lynn J Frewer•Science Technology & Human Values•2004

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  Open Access•Timothy Milewa, Justin Valentine et al.•Sociology of Health & Illness•1999

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  Open Access•Janet Newman, Elizabeth Vidler•Journal of Social Policy•2006

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