TY - JOUR
T1 - Patient participation in decision making on biomedical research: changing the network
AU - Caron - Flinterman, J.F.
AU - Broerse, J.E.W.
AU - Bunders - Aelen, J.G.F.
PY - 2007
Y1 - 2007
N2 - 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.
AB - 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.
U2 - 10.1177/0162243906298354
DO - 10.1177/0162243906298354
M3 - Article
SN - 0162-2439
VL - 32
SP - 339
EP - 368
JO - Science, Technology and Human Values
JF - Science, Technology and Human Values
IS - 3
ER -