Elsevier

Social Science & Medicine

Volume 56, Issue 5, March 2003, Pages 1001-1012
Social Science & Medicine

Involving the general public in priority setting: experiences from Australia

https://doi.org/10.1016/S0277-9536(02)00091-6Get rights and content

Abstract

The discussion over whether community preferences have a legitimate role to play in priority setting has been highly polarised. Skeptics warn of the risk of establishing a ‘dictatorship of the uninformed’, while advocates proclaim the legitimacy of the participatory process. The one group who appears not to be consulted in this debate is the citizens themselves. In this study, a convenience sample of 373 citizens attending two medical clinics in central Sydney were surveyed about whether the general public has a legitimate role to play in informing priority setting in health care. Respondents were presented with three different levels of priority setting: across health care programmes, across medical procedures, and at a global level. To assist respondents in understanding the choices and trade-offs involved, they were given information about current levels of funding and the cost-effectiveness of each alternative. Respondents were asked whether they felt the preferences of the general public should be used to inform priority setting at each level. Of particular interest was the question of whether their willingness to use public preferences depended on the level of priority setting. Respondents were also asked about who else's preferences should be used to inform priority setting at each level. The results suggest that the public overwhelmingly want their preferences to inform priority-setting decisions in health care. This was seen to be particularly important in informing decisions about how to prioritise across broad health care programmes and about the criteria to be used to allocate funds across different population groups. In contrast, the preferences of medical professionals and health service managers were rated most highly in relation to the prioritisation of different treatments and medical procedures. In most cases, however, respondents did not advocate the use of one particular group's preferences. Even when the preferences of the general public were considered most important, it was felt that any decision-making process needed to be informed by the preferences of a range of groups. The preferences of politicians were viewed as least important to processes of priority setting in health care.

Introduction

Limited resources, coupled with seemingly unlimited demand for health care, means that decisions have to be made regarding the allocation of scarce resources across competing health care interventions. During the past decade governments and health care systems in many parts of the world have witnessed initiatives to find more ways of transparently dealing with the problem of scarcity and giving the public a role in determining priorities (Dicker & Armstrong, 1995; Ham, 1993; Kitzhaber, 1993; Bowie, Richardson, & Sykes (1997), Leneghan (1999)).

Debates over public involvement in priority setting in health care occur at two key levels. First, there has been a methodological debate over the most effective means of consulting members of the general public about their preferences for different forms of health care and health services (Bowie, Richardson, & Sykes, 1995). Secondly, there has been an ethical debate over whether public preferences should be sought in the first place. A number of leading researchers have expressed reservations about public involvement in setting health care priorities (Hunter, 1993).

A few studies have helped to establish a fairly clear picture of how members of the general public choose to prioritise health services and treatments (Bowling, Jacobson, & Southgate, 1993; Bowling, 1996; Dixon & Welch, 1991; Richardson, Charny, & Hanmer-Lloyd, 1992; Stronks, Strijbis, Wendte, & Gunning-Schepers, 1997). It has consistently been revealed that life-saving technologies, and the care of people who are dying, are of a high priority. Some of these studies have also addressed the issue of who should make priority-setting decisions in health care (Bowling et al., 1993; Bowling, 1996; Richardson et al., 1992; Stronks et al., 1997). A common approach has been to ask about citizen involvement in priority setting without differentiating between levels of priority setting. For instance, it is often asked ‘should priority-setting decisions in health care be left to the doctors and other experts at the health authority?’ (Richardson et al., 1992) or ‘who should the responsibility of health care rationing rest with?’ (Bowling, 1996).

This study addresses a prior question; that is, whether the general public sees a legitimate role for their preferences in informing health care priorities. In other words, does the general public have a preference for the use of their preferences? If so, at what level of priority setting? In this study we have differentiated between three different levels of priority setting in an effort to examine whether support for using public preferences depends on what is actually being prioritised. The first involved setting priorities across health care programmes, the second across medical procedures, and the third concerned the type of principles or criteria that might be used to guide priority-setting decisions at a global level. Respondents were asked to assume that there was a fixed budget at each level. To assist respondents in understanding the complexities and trade-offs involved, they were given information concerning the way funds are currently allocated and the costs and effects associated with each alternative. Finally, we also investigated the question of whether there are any specific groups whose preferences should be given particular prominence. Most studies that have examined public preferences have bypassed such questions.

The paper begins with a brief exploration of some of the reasons for the growing call for public involvement in health care decision making and, in particular, priority setting. An outline of the survey methods used is given in Methods Section. This is followed by a presentation of the key results (Results Section). In Discussion Section the findings are discussed and future directions for research in this area are proposed.

Section snippets

Background: impetus for public involvement in priority setting

One of the key issues currently being debated in the Australian health care system is how to improve public participation and accountability activities at different decision-making levels of the system. Particular attention has been paid to public involvement in the development of health spending priorities (Commonwealth Department of Health and Aged Care (1999a), NSW Department of Health (1999b)). The NSW Health Department, for example, has called for a ‘public process of debate concerning the

Methods

A convenience sample of 373 citizens attending two central Sydney medical clinics was surveyed between September and November 2000. Every individual who met the eligibility criteria and attended the clinics between 9.00 am and 4.00 pm were invited to participate in the study. The average refusal rate across the two clinics was 18%. The main two reasons for not participating was feeling poorly and not enough time to complete the questionnaire. Participants were recruited from medical clinics

Results

The sociodemographic characteristics of those individuals who agreed to be surveyed are compared with the characteristics of the total Australian population in Appendix B. It can be seen that the sample population is not representative of the Australian population. Respondents in this study are more likely to be female, better educated, and have private health insurance.

The majority of citizens expressed a strong preference for using public preferences of the general public to inform

Discussion

The results of this study indicate that the public has a strong preference for the use of their preferences to inform priority setting in health care, with approximately three-quarters of participants advocating the use of citizen preferences. Similar (although not identical) questions have been asked in other public surveys with quite different results. In a local survey of 690 residents of Bath in the United Kingdom, the majority of respondents felt that ‘priority-setting decisions should be

Acknowledgements

The authors would like to thank Stephen Jan for his valuable comments and the National Health and Medical Research Council for financial support. This paper has also benefited from the helpful recommendations made by two anonymous reviewers and by participants at the International Health Economics Association conferences in 2001. Special thanks also goes to Nicola Howard who administered the questionnaires and to the staff and patients at the two Sydney health care facilities for their time and

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