Project details

For some years now, there has been an increasing demand for clinical trials to be conducted with or by patients, rather than (exclusively) on, about or for them. One of the "official" goals of patient involvement is the empowerment of patients. So far, however, there is no common understanding of what empowerment means in this context and when the goal of empowerment might be achieved. This lack of clarity leaves room for problems of understanding and misinterpretation. Moreover, the achievement of the goal of empowerment is not verifiable. Thus, there is not only the danger of arbitrariness, but also unnoticed, negative effects of patient involvement on the empowerment of patients are conceivable. It is therefore necessary to clarify the concept of empowerment in the field of patient involvement in clinical research. To this end, the project will a) review the conceptual literature on empowerment with regard to its application to the field of patient involvement in clinical trials, b) assess the impact of patient involvement in clinical research by means of a discourse analysis examines the tradition of the discourse on empowerment in patient involvement and which conceptual approaches are used in this context, and c) a qualitative survey illuminates which ideas patients and researchers have about empowerment. Based on this work, d) elements for a concept of empowerment in patient involvement will be identified and e) a funding proposal for a follow-up study will be developed. The project will end with f) an international symposium on empowerment in patient involvement. The project will be accompanied and advised by an expert advisory board.