Public participation in health care priority setting: A scoping review

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.

Section: Introductionmentioning

confidence: 99%

It takes a giraffe to see the big picture – Citizens' view on decision makers in health care rationing

Broqvist

Garpenby

2015

“…It is also clear that decision makers are seeking input from multiple publics on issues other than health priority setting. As Mitton and colleagues' (Mitton et al, 2009) review also highlights, they often combine deliberative and non-deliberative forms of consultation. In our review, researchers sought to involve the public for three basic reasons: to promote democratic accountability; to make sure that diverse and divergent perspectives were introduced into policy discussions; and to test the suitability of different deliberative techniques to generate evidence for policymaking.…”

Section: Discussionmentioning

confidence: 99%

“…Their study suggests that researchers are adapting 'jury' methods to attempt to meet the needs of policymakers, but because of tension between research aims and deliberative ideals, their success has been limited. Looking beyond the use of citizens' juries, other reviews show that public participation in deliberative events is an increasingly prominent feature of research in healthcare priority setting (Mitton et al, 2009), and, to a lesser extent, health technology assessment [HTA] (Gagnon et al, 2011). Mitton (2009) andGagnon's (2011) groups found that although the public's perspective added an important dimension to policy work, and governments appear to recognize the benefits of consulting multiple publics there is often poor alignment between deliberative research outcomes and actual policies.…”

Section: Figure 1 Types Of Deliberative Forummentioning

confidence: 99%

Which public and why deliberate? – A scoping review of public deliberation in public health and health policy research

Degeling

Carter

Rychetnik

2015

168

176

Deliberative methods are of increasing interest to public health researchers and policymakers. We systematically searched the peer-reviewed literature to identify public health and health policy research involving deliberative methods and report how deliberative methods have been used. We applied a taxonomy developed with reference to health policy and science and technology studies literatures to distinguish how deliberative methods engage different publics: citizens (ordinary people who are unfamiliar with the issues), consumers (those with relevant personal experience e.g. of illness) and advocates (those with technical expertise or partisan interests). We searched four databases for empirical studies in English published 1996-2013. This identified 78 articles reporting on 62 distinct events from the UK, USA, Canada, Australasia, Europe, Israel, Asia and Africa. Ten different types of deliberative techniques were used to represent and capture the interests and preferences of different types of public. Citizens were typically directed to consider community interests and were treated as a resource to increase democratic legitimacy. Citizens were preferred in methodological studies (those focused on understanding the techniques). Consumers were directed to focus on personal preferences; thus convened not as a source of policy decisions, but of knowledge about what those affected by the issue would accept. Advocates-who are most commonly used as expert witnesses in jurieswere sometimes engaged to deliberate with consumers or citizens. This almost always occurred in projects directly linked to policy processes. This suggests health policymakers may value deliberative methods as a way of understanding disagreement between perspectives. Overall however, the 'type' of public sought was often not explicit, and their role not specified. This review provides new insight into the heterogeneity and rising popularity of deliberative methods, and indicates a need for greater clarity regarding both the constitution of publics and the relative usefulness of different deliberative techniques.

“…This is consistent with Scuffham et al (2010) who draw upon a discrete choice model to examine health system preferences in the UK and Australia. However, our experiment employs instead the enormous potential of deliberative methods (Mitton et al 2009), which are still underdeveloped and worthy of further exploration particularly in the context of public insurance coverage expansion.…”

Section: Discussionmentioning

confidence: 99%

Participatory health system priority setting: Evidence from a budget experiment

Costa‐Font

Forns

Sato

2015

Budget experiments can provide additional guidance to heath system reform requiring the identification of a subset of programs and services that accrue the highest social value to 'communities'. Such experiments simulate a realistic budget resource allocation assessment among competitive programs, and position citizens as decision makers responsible for making 'collective sacrifices'. This paper explores the use of a participatory budget experiment (with 88 participants clustered in social groups) to model public health care reform, drawing from a set of realistic scenarios for potential health care users. We measure preferences by employing a contingent ranking alongside a budget allocation exercise (termed 'willingness to assign') before and after program cost information is revealed. Evidence suggests that the budget experiment method tested is cognitively feasible, incentive compatible. The main downside is the existence of ex-ante "cost estimation" bias. Additionally, we find that participants appeared to underestimate the net social gain of redistributive programs. Relative social value estimates can serve as a guide to aid priority setting at a health system level.