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Two-front individualization: The challenges of local patient organizations
Ersta Sköndal Bräcke University College, Centre for Civil Society Research.ORCID iD: 0000-0002-0595-3498
Uppsala universitet.ORCID iD: 0000-0002-3858-3454
2020 (English)In: Journal of Civil Society, ISSN 1744-8689, E-ISSN 1744-8697, Vol. 16, no 1, p. 77-95Article in journal (Refereed) Published
Abstract [en]

Patient organizations such as those in Sweden face individualization processes on two fronts, both in their own voluntary sector and in the healthcare sector. The aim of this study is to investigate how the patient organizations are handling the two-front individualization process internally in their organizations, as well as externally towards a more patient-centred healthcare system.With more diverse stakeholders and individual patients given increased influence, we would expect a corresponding adjustment in the strategies of the patient organizations. The article’s focus is on the organizations’ representative role, and theories on advocacy strategies are used to identify the nature of the patient organizations’ advocacy work. To find out how adjustments are made, 17 semi-structured interviews were conducted with representatives from local branches of three large Swedish patient organizations. The interviews show a low tendency to adjust as a response to this two-front individualization and illustrate a paralyzed rather than modified behaviour in these organizations. Individualization being a global trend, we believe these results are of interest to scholars of collective participation in all parts of the world.

Place, publisher, year, edition, pages
ROUTLEDGE JOURNALS, TAYLOR & FRANCIS LTD , 2020. Vol. 16, no 1, p. 77-95
Keywords [en]
Individualization; patient organizations; voluntary organizations; participation; organizational change; healthcare reform
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-9241DOI: 10.1080/17448689.2020.1721725OAI: oai:DiVA.org:esh-9241DiVA, id: diva2:1610092
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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Mankell, Anna

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