Background There is full awareness of the urge to integrate patient perspectives in guidelines. Active patient participation in guideline development is advocated, the passive use of research results on patient preferences is rather limited.
Objectives To explore ideas and opinions regarding potential barriers and facilitators for integrating research results on patient preferences in guideline development.
Methods Eight interviews were held with patient representatives, guideline developers, policy-makers and researchers. Interviews were semi-structured along three themes: definition of patient preferences; consideration of research on patient preferences in guideline development and aspects of obtaining patient preferences through research.
Results Most interviewees defined preferences broadly, using terms as ideas, values, wishes, needs, expectations and experiences. Others described preferences exclusively as comparative judgments. Interviewees had difficulties reflecting on considering patient preferences by using research results, instead of active participation. Although the general increasing focus on patient participation facilitates the use of research results, many barriers were mentioned: relevance of collective preference for individual decision-making; focus of evidence-based medicine on “hard evidence”; lack of reliable and valid data; unclear how to integrate research results into the development procedure.. Patient- and professional organisations often generate own evidence, with unclear scientific character.
Discussion The results show which issues are important and need further clearance. Interviewees define patient preferences differently, do not believe in using such research results or do not know how to do it.
Implications for Guideline Developers/Users Several issues need to be addressed to facilitate the integration of research results on patient preferences in guideline development.
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