Background Active patient participation is embedded in health care decision-making, like clinical practice guideline (CPG) development and coverage decisions. The systematic use of the available evidence on patient preferences (passive participation) is still limited.
Objectives To describe how and what type of evidence on patient preferences is considered in health care policy decisions in The Netherlands, England, Scotland, Germany and France.
Methods A document search on website and database of responsible organisations for material on current development procedures. Scoping literature search on opinion papers on the use of research on patient preferences in CPG development and coverage decisions (HTA). Selected CPG and coverage decisions were checked.
Results Procedures for coverage decisions do not mention the search for or use of research on patient preferences, nor was information found in the coverage case studies. In CPG development procedure a mandatory (Scotland) or optional (Netherlands) search for studies that reflect patients’ experiences and preferences is described. The CPG case studies show various use of patient preferences in different conceptualisations.
Discussion In coverage decisions research on patient preferences has no formal role yet. In CPG this role is limited. Integration of research on patient preferences is hampered by several factors.
Implications for Guideline Developers/Users Directions for the future include: 1) conceptual work on defining and measuring patient preferences; 2) reaching consensus on the value and place of research on patient preferences for and in procedures and 3) developing a strategy for integration in procedures.
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