Abstract

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Patient representation, disability advocacy and health social movements have increasingly been included in decision-making processes over the last decades. The idea that people with disabilities should have a say in health care and health policy is widely accepted and legitimated, because they are the ones affected by such policies and consuming such care. While in most of the literature it is stated that this democratisation process of health care has not expanded enough, others have been sceptic about the desirability of further democratisation of health care. Proponents and opponents of ‘more power to the patients’ continue to debate the evidence for inclusion of patient and disability advocacy organizations in decision-making and how ‘lay’-perspectives should be valued. So far, only little attention has been payed to the assumption that such organizations represent a collective. Important questions are therefore still open, such as how these organizations come to their knowledge and standpoints, and whom they actually represent. In our session we want to address the following research questions along three main themes:

A. Organizational Issues: How do organizational members - patients and carers – view issues of collective advocacy, representation and autonomy? How do patient organizations with various backgrounds (as umbrella organisation, or with a close focus on a disease/disability/cognitive impairment) actually allow for, representation and participation within such an organization as well as to the political/expert system?

B. Theories of representation: Furthermore, we are interested in theoretical reflections on self-advocacy vs. professional representation in relation to the politics of representation and identity in health care/disability politics.

C. Relevance of socio-cultural contexts: How far do processes/modes of representation and advocacy on the regional, national or transnational level correspond/reflect/react to local and cultural factors of health care and illness conceptions?

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Session organizer(s)

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Silke Schicktanz (DE) – is full-professor for Culture and Ethics of Biomedicine at the University Medical Center Goettingen, Germany. Her main interest is ethics of Life Sciences and Medicine, but in relation to medical sociology, cultural anthropology and health policy studies. She was visiting fellow at Tel Aviv University, JNU Delhi, CESAGEN Lancaster and UC Berkeley. As PI she has extensive experience in interdisciplinary projects, funded e.g. by the EU, German-Israeli Foundation, Volkswagen-Foundation. She publishes on ethical and social issues of biomedicine, gender issues, theories of democratizing science as well as empirically informed ethics.

 

Aviad Raz (IL) – is director of the Behavioral Sciences program of the Department of Sociology and Anthropology at Ben-Gurion University of the Negev. His research focuses on religious/ethnic groups and identities in contemporary Israeli society, especially in the context of health and family studies. He studies the social and bioethical aspects of medical organizations, community genetics and patient support organizations. Raz publishes internationally on topics in organizational and medical sociology, anthropology, culture, and science. He was a Post-doctoral Fellow at Harvard, held fellowships from the Japan Foundation and was Visiting AICE Professor at UC San Diego.

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