On the 9th of May 2022 Julia Fischer defended her PhD thesis – entitled “The political presence of patients” – at the University of Innsbruck. The thesis was co-supervised by Hester van de Bovenkamp. Exploring the role of patients in health policy decision making and on practices of making patients matter to politics, the thesis contributes to gaining a fuller sense of how and by whom patients are being rendered politically visible and audible in political decision-making processes. It analyzes the representative efforts of different patient organizations in Austria, Germany, and the Netherlands, as well as those of German parliamentarians. In many cases, patient organizations and parliamentarians were found to ground their representative claims on direct contact with patients and on empirical evidence into the experience of patients – which is desirable as it contributes to the worth and value of political patient representation. However, problematically, political patient representation often appears to be performed in a unifying manner. Both patient organizations and parliamentarians rendered patients politically visible as a homogenous group within which all members share identical wants and needs. This conceals the diversity among patients and may contribute to creating a reality out of sync with the needs and wants of those patients who do not comply with the single political presence provided by parliamentarians and patient organizations. The thesis therefore concludes by suggesting that for the future it will be important to find ways to do more justice to patient diversity in politics.
Proefschrift “The political presence of patients”
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