Skip to main content
Top
Published in: Journal of Bioethical Inquiry 3/2018

01-09-2018 | Symposium: Collective Representation in Healthcare Policy

One For All, All For One? Collective Representation in Healthcare Policy

Authors: Karin Jongsma, Nitzan Rimon-Zarfaty, Aviad Raz, Silke Schicktanz

Published in: Journal of Bioethical Inquiry | Issue 3/2018

Login to get access

Abstract

Healthcare collectives, such as patient organizations, advocacy groups, disability organizations, professional associations, industry advocates, social movements, and health consumer organizations have been increasingly involved in healthcare policymaking. Such collectives are based on the idea that individual interests can be aggregated into collective interests by participation, deliberation, and representation. The topic of collectivity in healthcare, more specifically collective representation, has only rarely been addressed in (Western) bioethics. This symposium, entitled: “Collective Representation in Healthcare Policy” of the Journal of Bioethical Inquiry draws attention to this understudied topic from a variety of disciplines, within a variety of socio-cultural contexts. We draw attention to important ethical, cultural, and social questions, and into the practices, justifications for, and implications of collective representation of patients in healthcare policy.
Literature
go back to reference Beier, K, I. Jordan, C. Wiesemann, and S. Schicktanz. 2016. Understanding Collective Agency in Bioethics. Medicine Health Care and Philosophy 19(3): 411–22.CrossRef Beier, K, I. Jordan, C. Wiesemann, and S. Schicktanz. 2016. Understanding Collective Agency in Bioethics. Medicine Health Care and Philosophy 19(3): 411–22.CrossRef
go back to reference Dryzek, J.S., 2000. Deliberative democracy and beyond. New York: Oxford University Press. Dryzek, J.S., 2000. Deliberative democracy and beyond. New York: Oxford University Press.
go back to reference Dumas, A. 1982. The three musketeers. New York: Penguin Classics. Dumas, A. 1982. The three musketeers. New York: Penguin Classics.
go back to reference Epstein, S. 2008. Patient groups and health movements. In The handbook of science and technology studies, edited by E. Hackett, O. Amsterdamska, M. Lynch, W.J. Cambridge, 499–439. Cambridge: MIT Press. Epstein, S. 2008. Patient groups and health movements. In The handbook of science and technology studies, edited by E. Hackett, O. Amsterdamska, M. Lynch, W.J. Cambridge, 499–439. Cambridge: MIT Press.
go back to reference ----. 2011. Measuring success: Scientific, institutional and cultural effects of patient advocacy. In Patients as policy actors, edited by B. Hoffman, 257–277. Rutgers University Press. ----. 2011. Measuring success: Scientific, institutional and cultural effects of patient advocacy. In Patients as policy actors, edited by B. Hoffman, 257–277. Rutgers University Press.
go back to reference Hutchison, K., W. Rogers, and V.A. Entwistle. 2017. Addressing deficits and injustices: The potential epistemic contributions of patients to research. Health Care Analysis 25(4): 386–403.CrossRef Hutchison, K., W. Rogers, and V.A. Entwistle. 2017. Addressing deficits and injustices: The potential epistemic contributions of patients to research. Health Care Analysis 25(4): 386–403.CrossRef
go back to reference Gerhards, H., K. Jongsma, and S. Schicktanz. 2017. The relevance of different trust models for representation in patient organizations: Conceptual considerations. BMC Health Services Research 17(1): 474.CrossRef Gerhards, H., K. Jongsma, and S. Schicktanz. 2017. The relevance of different trust models for representation in patient organizations: Conceptual considerations. BMC Health Services Research 17(1): 474.CrossRef
go back to reference Pitkin, H.F. 1967. The concept of representation. Berkeley: University of California Press. Pitkin, H.F. 1967. The concept of representation. Berkeley: University of California Press.
go back to reference Pugh, J. 2018. Navigating individual and collective interests in medical ethics. Journal of Medical Ethics 44(1): 1–2.CrossRef Pugh, J. 2018. Navigating individual and collective interests in medical ethics. Journal of Medical Ethics 44(1): 1–2.CrossRef
go back to reference Rojatz, D., J. Fischer, and H.M. van de Bovenkamp. 2018. Legislating patient representation: A comparison between Austrian and German regulations on self-help organizations as patient representatives. Journal of Bioethical Inquiry 15(3). https://doi.org/10.1007/s11673-018-9864-7 Rojatz, D., J. Fischer, and H.M. van de Bovenkamp. 2018. Legislating patient representation: A comparison between Austrian and German regulations on self-help organizations as patient representatives. Journal of Bioethical Inquiry 15(3). https://​doi.​org/​10.​1007/​s11673-018-9864-7
go back to reference Schicktanz, S. 2015. The ethical legitimacy of patient organizations’ involvement in politics and knowledge production: Epistemic justice as a conceptual basis. In The public shaping of medical research: Patient associations, health movements and biomedicine, edited by. P. Wehling, W. Viehover, and S. Koenen, 246–264. London, U.K.: Routledge. Schicktanz, S. 2015. The ethical legitimacy of patient organizations’ involvement in politics and knowledge production: Epistemic justice as a conceptual basis. In The public shaping of medical research: Patient associations, health movements and biomedicine, edited by. P. Wehling, W. Viehover, and S. Koenen, 246–264. London, U.K.: Routledge.
Metadata
Title
One For All, All For One? Collective Representation in Healthcare Policy
Authors
Karin Jongsma
Nitzan Rimon-Zarfaty
Aviad Raz
Silke Schicktanz
Publication date
01-09-2018
Publisher
Springer Singapore
Published in
Journal of Bioethical Inquiry / Issue 3/2018
Print ISSN: 1176-7529
Electronic ISSN: 1872-4353
DOI
https://doi.org/10.1007/s11673-018-9870-9

Other articles of this Issue 3/2018

Journal of Bioethical Inquiry 3/2018 Go to the issue

Symposium: Collective Representation in Healthcare Policy

Mitochondrial Replacement Techniques

Symposium: Collective Representation in Healthcare Policy

Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel