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Asking the public: Citizens´ views on priority setting and resource allocation in democratically governed healthcare
Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences.
2018 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Resource allocation in publicly funded healthcare systems is inevitably linked with priority setting between different patient groups and between different service areas, so-called meso level priorities. Behind every priority-setting decision (investments, reallocating or rationing), are values affecting both the content of the decisions and how the decisions are made. The importance for priority-setting to reflect social values, has been emphasised for the legitimacy of the healthcare systems and the decision makers. Also important, if supposed to provide enough guidance in practice, is that content values, expressed in ethical principles and criteria, are further operationalised. Few studies exist where Swedish citizens have been asked about priority setting and rationing at meso level, and findings from other countries cannot automatically be transferred to the Swedish context.

The overall aim of this thesis is to extend and deepen the knowledge of the Swedish citizens´ views on acceptance of rationing in healthcare, on appropriate decision makers for rationing, and on the severity criterion for priority setting. Two qualitative and one mixmethod study were conducted, where citizens were interviewed. Citizens´ views on severity were also compared, both with a Severity Framework, derived from parliamentary-decided ethical principles and used for resource allocation, and with health professionals´ and politicians´ ranking of different aspects of severity in a quantitative, survey study.

Study I shows that citizen participants perceived that acceptance of rationing at meso level is built on the awareness of priority-setting dilemmas between patient groups. No such spontaneous awareness was found. Depending on reactions of self-interest or solidarity, acceptance was also perceived to be built on acceptable principles for rationing and/or access to alternatives to public care. Study II shows that awareness of the meso level forms the basis for awareness of different risks of unfairness, linked with potential decision makers (even health professionals). Collaborative arrangements were promoted in order to control for such risks, especially the risk of self-interest. Politicians, in contrast to previous studies, were favoured as final decision makers for rationing healthcare. In study III, citizen participants identified the same severity aspects as health professionals and experts had done in the Severity Framework. They contributed with some possible refinements, but also promoted aspects not in line with established ethical criteria for priority setting in Sweden. Study IV shows that citizen respondents differ to a larger proportion compared to politicians´ ranking of severity aspects, than with that of health professionals´. The greatest number of significant differences was found between politicians and health professionals.

This thesis has several implications. Politicians ought to strive for greater public awareness of the priority-setting dilemma at the meso level in healthcare, both according to the process and the content values behind the decisions. Social values not in accordance to the parliamentary decision indicate a need to facilitate an ongoing dialogue, reason-giving activities and promotion of content values of solidarity. To capture social values on priority setting and rationing, ambitious public deliberation is not the only way. Methodologically stringent research, with a variety of study designs, could contribute in many important ways.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2018. , p. 138
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1587
National Category
Health Care Service and Management, Health Policy and Services and Health Economy Medical Ethics Public Administration Studies Social Sciences Interdisciplinary
Identifiers
URN: urn:nbn:se:liu:diva-146217DOI: 10.3384/diss.diva-146217ISBN: 9789176854518 (print)OAI: oai:DiVA.org:liu-146217DiVA, id: diva2:1194442
Public defence
2018-04-20, Hasselquistsalen, Campus US, Linköping, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2018-04-03 Created: 2018-04-03 Last updated: 2019-06-27Bibliographically approved
List of papers
1. To accept, or not to accept, that is the question: citizen reactions to rationing
Open this publication in new window or tab >>To accept, or not to accept, that is the question: citizen reactions to rationing
2014 (English)In: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625, Vol. 17, no 1, p. 82-92Article in journal (Refereed) Published
Abstract [en]

Background  The publicly financed health service in Sweden has come under increasing pressure, forcing policy makers to consider restrictions. Objective  To describe different perceptions of rationing, in particular, what citizens themselves believe influences their acceptance of having to stand aside for others in a public health service. Design  Qualitative interviews, analysed by phenomenography, describing perceptions by different categories. Setting and participants  Purposeful sample of 14 Swedish citizens, based on demographic criteria and attitudes towards allocation in health care. Results  Participants expressed high awareness of limitations in public resources and the necessity of rationing. Acceptance of rationing could increase or decrease, depending on one's (i) awareness that healthcare resources are limited, (ii) endorsement of universal health care, (iii) knowledge and acceptance of the principles guiding rationing and (iv) knowledge about alternatives to public health services. Conclusions  This study suggests that decision makers should be more explicit in describing the dilemma of resource limitations in a publicly funded healthcare system. Openness enables citizens to gain the insight to make informed decisions, i.e. to use public services or to 'opt out' of the public sector solution if they consider rationing decisions unacceptable.

Place, publisher, year, edition, pages
John Wiley & Sons, 2014
Keywords
citizen perspective, phenomenography, priority setting, rationing, Sweden
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-104308 (URN)10.1111/j.1369-7625.2011.00734.x (DOI)000330647300010 ()22032636 (PubMedID)
Available from: 2014-02-14 Created: 2014-02-14 Last updated: 2018-04-03
2. It takes a giraffe to see the big picture - Citizens' view on decision makers in health care rationing
Open this publication in new window or tab >>It takes a giraffe to see the big picture - Citizens' view on decision makers in health care rationing
2015 (English)In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 128, p. 301-308Article in journal (Refereed) Published
Abstract [en]

Previous studies show that citizens usually prefer physicians as decision makers for rationing in health care, while politicians are downgraded. The findings are far from clear-cut due to methodological differences, and as the results are context sensitive they cannot easily be transferred between countries. Drawing on methodological experiences from previous research, this paper aims to identify and describe different ways Swedish citizens understand and experience decision makers for rationing in health care, exclusively on the programme level. We intend to address several challenges that arise when studying citizens' views on rationing by (a) using a method that allows for reflection, (b) using the respondents' nomination of decision makers, and (c) clearly identifying the rationing level. We used phenomenography, a qualitative method for studying variations and changes in perceiving phenomena. Open-ended interviews were conducted with 14 Swedish citizens selected by standard criteria (e.g. age) and by their attitude towards rationing. The main finding was that respondents viewed politicians as more legitimate decision makers in contrast to the results in most other studies. Interestingly, physicians, politicians, and citizens were all associated with some kind of risk related to self-interest in relation to rationing. A collaborative solution for decision making was preferred where the views of different actors were considered important. The fact that politicians were seen as appropriate decision makers could be explained by several factors: the respondents' new insights about necessary trade-offs at the programme level, awareness of the importance of an overview of different health care needs, awareness about self-interest among different categories of decision-makers, including physicians, and the national context of long-term political accountability for health care in Sweden. This study points to the importance of being aware of contextual and methodological issues in relation to research on how citizens experience arrangements for rationing in health care.

Place, publisher, year, edition, pages
Elsevier, 2015
Keywords
Sweden Health care Rationing Programme level Decision maker Citizens' view Interview Phenomenography
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:liu:diva-115129 (URN)10.1016/j.socscimed.2015.01.043 (DOI)000351323500037 ()25638017 (PubMedID)
Note

The authors gratefully acknowledge the contribution made by the participants in this study. This study was supported by the Swedish Federation of County Councils Research Program on Change Processes in Health Care and the Swedish National Centre for Priority Setting in Health Care.

Available from: 2015-03-09 Created: 2015-03-09 Last updated: 2018-04-03
3. The meaning of severity - do citizenś views correspond to a severity framework based on ethical principles for priority setting?
Open this publication in new window or tab >>The meaning of severity - do citizenś views correspond to a severity framework based on ethical principles for priority setting?
2018 (English)In: Health Policy, ISSN 0168-8510, E-ISSN 1872-6054, Vol. 122, no 6, p. 630-637, article id S0168-8510(18)30081-2Article in journal (Refereed) Published
Abstract [en]

The importance for governments of establishing ethical principles and criteria for priority setting in line with social values, has been emphasised. The risk of such criteria not being operationalised and instead replaced by de-contextualised priority-setting tools, has been noted. The aim of this article was to compare whether citizenś views are in line with how a criterion derived from parliamentary-decided ethical principles have been interpreted into a framework for evaluating severity levels, in resource allocation situations in Sweden. Interviews were conducted with 15 citizens and analysed by directed content analysis. The results showed that the multi-factorial aspects that participants considered as relevant for evaluating severity, were similar to those used by professionals in the Severity Framework, but added some refinements on what to consider when taking these aspects into account. Findings of similarities, such as in our study, could have the potential to strengthen the internal legitimacy among professionals, to use such a priority-setting tool, and enable politicians to communicate the justifiability of how severity is decided. The study also disclosed new aspects regarding severity, of which some are ethically disputed, implying that our results also reveal the need for ongoing ethical discussions in publicly-funded healthcare systems.

Place, publisher, year, edition, pages
Elsevier, 2018
Keywords
Citizens views, Directed content analysis, Ethical principles, Priority setting, Severity of ill health, Sweden
National Category
Medical Ethics
Identifiers
urn:nbn:se:liu:diva-147772 (URN)10.1016/j.healthpol.2018.04.005 (DOI)000438479000010 ()29728287 (PubMedID)
Available from: 2018-05-14 Created: 2018-05-14 Last updated: 2019-06-27

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