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Science, Technology & Human Values
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Patient Partnership in Decision-Making on Biomedical Research

Changing the Network

J. Francisca Caron-Flinterman

Athena Institute for Research on Innovation and Communication in Health and Life Sciences, Vrije Universiteit Amsterdam, the Netherlands, francisca.caron.flinterman{at}falw.vu.nl

Jacqueline E. W. Broerse

Athena Institute for Research on Innovation and Communication in Health and Life Sciences, Vrije Universiteit Amsterdam, the Netherlands

Joske F. G. Bunders

Athena Institute for Research on Innovation and Communication in Health and Life Sciences, Vrije Universiteit Amsterdam, the Netherlands

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.

Key Words: user participation • patient involvement • biomedical research • socio-technical networks • transition management

Science, Technology & Human Values, Vol. 32, No. 3, 339-368 (2007)
DOI: 10.1177/0162243906298354
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