Suchergebnisse

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.

During the past decade, patient participation became an important issue in the medical field, and patient participation in biomedical research processes is increasingly called for. One of the arguments for this refers to the specific kind of knowledge, called experiential knowledge, patients could contribute. Until now, participation of patients in biomedical research has been rare, and integration of patients' experiential knowledge with scientific knowledge—in the few cases it takes place—occurs implicitly and on an ad hoc basis. This is illustrated by describing and analyzing the activities of the German patient group on retinitis pigmentosa. The authors argue that to be able to optimize the use of experiential knowledge of patients in biomedical research, a systematic approach is required. Transdisciplinary research provides such an approach, systematically, explicitly, and deliberately integrating knowledge from different scientific and nonscientific sources. In this article, the concept of transdisciplinarity is elaborated upon. The authors propose a possible procedure, identify necessary conditions and skills, and evaluate the feasibility of its implementation and institutionalization. Finally, the authors introduce a recent research project to further investigate and implement transdisciplinary research in the biomedical field.