Background: The patient perspective is increasingly considered in healthcare policy decisions. The use of research\non patient preferences seems however limited. Using the available research on patient preferences would make\nhealthcare policy decisions more evidence-based regarding the patient perspective. Objective of this study is to\ninvestigate whether and how results of research on patient preferences are incorporated in current procedures for\npharmaceutical coverage decisions and clinical practice guideline (CPG) development.\nMethods: A document analysis on procedure descriptions was combined with case studies. Analyses were\nperformed for five European countries. In the document analysis we systematically checked whether the procedure\nprovides guidance on the systematic use of research on patient preferences, and whether the search and use of\nresearch on patient preferences is mentioned in the decision making procedure. In the case studies, which were for\nexploratory purposes, we scored whether or not research question on patient preferences were formulated,\nwhether or not a search strategy including terms relating to patient preferences was mentioned, whether results of\nthis search strategy were shown and finally, how many references with preference-related terms were included in\nthe reference list of the case.\nResults: None of the procedures for pharmaceutical coverage decisions mentions the systematic consideration of\nresearch on patient preferences. For CPG development, the Scottish procedure refers to a mandatory literature\nsearch. In the Netherlands this step is optional. In the case studies for pharmaceutical coverage decisions only one\nreference related to patient preferences was found. Some of the case studies for CPG included research questions,\nsearch strategies and references relating to patient preferences.\nConclusions: This study illustrates that systematic consideration of research on patient preferences in\npharmaceutical coverage decisions and guideline development is limited, or if taken into account, this is not visible.\nThis contrasts the strong movement towards patient involvement in health care. Several potential barriers may\nexplain the limited use of research on patient preferences.
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