The use of research evidence on patient preferences in pharmaceutical coverage decisions and clinical practice guideline development: exploratory study into current state of play and potential barriers

BACKGROUND: The patient perspective is increasingly considered in healthcare policy decisions. The use of research on patient preferences seems however limited. Using the available research on patient preferences would make healthcare policy decisions more evidence-based regarding the patient perspective. Objective of this study is to investigate whether and how results of research on patient preferences are incorporated in current procedures for pharmaceutical coverage decisions and clinical practice guideline (CPG) development. METHODS: A document analysis on procedure descriptions was combined with case studies. Analyses were performed for five European countries. In the document analysis we systematically checked whether the procedure provides guidance on the systematic use of research on patient preferences, and whether the search and use of research on patient preferences is mentioned in the decision making procedure. In the case studies, which were for exploratory purposes, we scored whether or not research question on patient preferences were formulated, whether or not a search strategy including terms relating to patient preferences was mentioned, whether results of this search strategy were shown and finally, how many references with preference-related terms were included in the reference list of the case. RESULTS: None of the procedures for pharmaceutical coverage decisions mentions the systematic consideration of research on patient preferences. For CPG development, the Scottish procedure refers to a mandatory literature search. In the Netherlands this step is optional. In the case studies for pharmaceutical coverage decisions only one reference related to patient preferences was found. Some of the case studies for CPG included research questions, search strategies and references relating to patient preferences. CONCLUSIONS: This study illustrates that systematic consideration of research on patient preferences in pharmaceutical coverage decisions and guideline development is limited, or if taken into account, this is not visible. This contrasts the strong movement towards patient involvement in health care. Several potential barriers may explain the limited use of research on patient preferences. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12913-014-0540-2) contains supplementary material, which is available to authorized users.