Rethinking public engagement in health care priority setting

Health care actors—including, for instance, ministries of health, non-profit hospitals, and private insurers—must allocate limited health resources. Increasingly, these actors face pressure to engage the public when making these decisions; however, the rationale for doing so remains contested. Multiple plausible justifications for engaging the public have been proposed: some bioethicists have argued that public engagement helps policymakers understand and respond to the public’s values and health priorities, while others have rooted the practice of public engagement in democratic governance, informed consent, or other procedural considerations.

In this talk, I will argue that health care actors have an obligation to engage the public when doing so will lead to more substantively just decisions, but that this practice is not a requirement of procedural justice. Moreover, I will suggest that haphazard public engagement can produce decisions that are substantively unjust. Specifically, ill-advised public engagement can cloak unjust decisions under a veneer of procedural legitimacy while subverting minority rights. These harms are underexplored and undertheorized.

This reframing has important implications for the practice of public engagement, which I will explore. For instance, I will suggest that the public should weigh in on issues that they are knowledgeable about (e.g., their own health needs), but not on issues that will predictably open the door to bias and discrimination (e.g., the relative deservingness of two different patient populations). I will conclude by making practical recommendations for decision-makers involved in priority-setting decisions.