Reluctant rationers: public input to health care priorities

Members of the public can adopt any one of at least three roles when providing input to public decision-making: taxpayer, collective community decision-maker, or patient. Each of these potential roles can be mapped onto three areas of public policy decision-making in health care: funding levels and organization for the system, the services we choose to offer under public funding, and the characteristics of those who should receive the offered services. The increasing desire to involve the public across the spectrum of health care decision-making has yet to result in a clear delineation of either which of the areas are most appropriate for public input or which of the roles we wish individual participants to adopt. The average citizen (as opposed to the self-interested patient, the provider or the manager) has so far shown little interest in contributing and rarely has the requisite skills for most of the tasks asked of him or her. The widespread motivation of governments and others for seeking public input appears to be to get the public to take or share ownership in the tough rationing choices consequent on fiscal retrenchment in health care. Evaluation of existing literature leads to the conclusion that there are only limited areas where we might wish to obtain significant public input if we adopt this widespread policy motivation. Specifically, the general public should be asked to give input to, but not determine, priorities across the broad service categories that could potentially be publicly funded. Members of the public have neither the interest nor the skills to do this at the level of specific services. The role expected of such members of the public should be made explicit and should focus on collective views of the community good rather than self-interested views of individual benefit. Groups of patients, however, should be the source of input when socio-demographic characteristics are being used to decide who should receive offered services. The role expected of these consumers is not, however, to take a self-interested perspective; rather, it is to adopt Rawls' 'veil of ignorance' to reflect compassionate views of priorities across socio-demographic characteristics. Finally, there appears to be no best method for obtaining public input that overcomes the common problems of poor information upon which to base priorities, difficulty in arriving at consensus, poor representativeness of participants, and lack of opportunity for informed discussion prior to declaring priorities. There is some suggestion, however, that panels of citizens or patients, convened on an ongoing basis and provided with the opportunity to acquire relevant information and discuss its implications prior to making consensus recommendations, offer the most promising way forward.