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Federative patient organizations in a decentralized health-care system: A challenge for representation?
Ersta Sköndal Bräcke University College, Department of Social Sciences.ORCID iD: 0000-0002-0595-3498
Uppsala universitet.ORCID iD: 0000-0002-3858-3454
2020 (English)In: Health, ISSN 1363-4593, E-ISSN 1461-7196, Vol. 25, no 6, p. 722-738Article in journal (Refereed) Published
Abstract [en]

Over the last two decades, the inclusion of patient voices and public values in the field of health care through deliberation has become increasingly emphasized, by patients as well as policy-makers. This is achieved not only through individual patient participation but also through patient interest organizations. Geographical representation within national interest organizations is especially important in a decentralized, multilevel policy field such as Swedish health care, allowing representation from all regions to be present in national advocacy. Using Pitkin’s conceptualization of political representation,this study aims to characterize the shaping of representation among Swedish federative patient organizations, in a time of professionalization and centralization of civil society.The results show that patient organization representation has functioning mechanisms for all studied aspects of representation; however, the nature of the substantive representation seems to contain a challenge from a democratic perspective. This leads us to a discussion about management, rooted in democratic ideals but simultaneously strongly characterized by more managerial ideals, and the contradiction of democracy and actionable management.

Place, publisher, year, edition, pages
Sage Publications, 2020. Vol. 25, no 6, p. 722-738
Keywords [en]
Health(social science) decentralized health-care system, interest organizations, patient organizations, representation
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Research subject
The Individual in the Welfare Society, Social Welfare and the Civil Society
Identifiers
URN: urn:nbn:se:esh:diva-9242DOI: 10.1177/1363459320912807OAI: oai:DiVA.org:esh-9242DiVA, id: diva2:1610104
Available from: 2021-11-10 Created: 2021-11-10 Last updated: 2023-02-17Bibliographically approved
In thesis
1. Collective Patient Participation: Patient Voice and Civil Society Organizations in Healthcare
Open this publication in new window or tab >>Collective Patient Participation: Patient Voice and Civil Society Organizations in Healthcare
2021 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The importance of engaging patients in the development of healthcare services and policy has received increasing attention over the last decades. However, this attention has mainly been directed towards various forms of involvement of individual patients. This dissertation shifts focus to the collective forms of patient participation and the specific values they bring. The overall aim of the dissertationis to explore how collective patient participation is shaped, in an increasingly individualized and marketized society. The articles included in the dissertation analyze aspects such as advocacy work, representation mechanisms and coproduction practices at different levels of healthcare. These aspects are studied from the perspective of civil society organizations navigating current social trends such as individualization and marketization. Taken together, the findings point to the importance of considering the preconditions of the individual patient to engage in patient participation in a collective form. This appears to be an important factor in the shaping of collective patient participation, as well as a potential challenge for both advocacy and representation. The findings also indicate that individual and collective forms of participation should not be seen as two conflicting interests, but could rather be mutually strengthening, something that should be considered both by civil society organizations and healthcare policymakers. Furthermore, this dissertation contributes to a better understanding of the diverse nature of patient participation, and how these variations all play important yet distinct roles in improving democratic and quality aspects of healthcare.

Place, publisher, year, edition, pages
Stockholm: Ersta Sköndal Bräcke högskola, 2021. p. 142
Series
Avhandlingsserie inom området Människan i välfärdssamhället, ISSN 2003-3699 ; 13
Keywords
patient participation, healthcare, involvement, patient organizations, advocacy, representation, coproduction, marketization, individualization, civil society
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Research subject
The Individual in the Welfare Society, Social Welfare and the Civil Society
Identifiers
urn:nbn:se:esh:diva-9247 (URN)978-91-985806-2-4 (ISBN)
Public defence
2021-12-10, Aulan, Campus Ersta, 09:00
Opponent
Supervisors
Available from: 2021-11-17 Created: 2021-11-10 Last updated: 2023-09-22

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