Patient participation in decision making on biomedical research: changing the network

J.F. Caron - Flinterman, J.E.W. Broerse, J.G.F. Bunders - Aelen

    Research output: Contribution to JournalArticleAcademicpeer-review

    Abstract

    Participation of end users in decision-making on science is increasingly practiced, as witnessed by the growing body of scientific literature on case evaluations. In the biomedical field, however, end-user participation in decision-making is rare. Some scholars argue that because patients are stakeholders and relevant experts, they could also provide important contributions to decision-making within the field of biomedical research. But what strategies could be used to effectively implement patient participation in decision-making on biomedical research? In this article, we analyze strategies for patient participation and conclude that these can hardly be regarded effective because they do not ensure patients' structural influence on decision-making. We identify obstacles for effective patient participation, which seem to reflect a resilience of the current biomedical decision-making network. We subsequently elaborate on the concept of transition management in the search for clues on how to breach this resilience and change the network toward the inclusion of patients. © 2007 Sage Publications.
    Original languageEnglish
    Pages (from-to)339-368
    JournalScience, Technology and Human Values
    Volume32
    Issue number3
    DOIs
    Publication statusPublished - 2007

    Fingerprint

    Dive into the research topics of 'Patient participation in decision making on biomedical research: changing the network'. Together they form a unique fingerprint.

    Cite this