Patient and public involvement: ethical justifications, expert knowledge, and deliberative democracy

Abstract

Across many countries worldwide, support for patient and public involvement (PPI) in health care has grown significantly over the last two decades. Calls to democratize the health care system have resulted in a system where patients are increasingly involved in the design of medical research and members of the public have been called upon to help make decisions concerning various elements of national, regional, and local health care policy. In some countries, like the UK, laws on the books now mandate that health care institutions meet certain benchmarks in PPI in order to be eligible for national funding. Though many scholars have sought to understand how society can make PPI efforts more "effective," they have largely neglected to provide an overarching justification for involvement in the first place. This thesis seeks to understand whether such a justification exists. I examine two sets of arguments in support of PPI: one that maintains PPI simply improves the quality, relevance, or effectiveness of medical research and health care provision (the outcomes-based argument) and one that appeals to notions of democratic legitimacy and representation. I argue that the outcome-centered argument wrongly presupposes an agreement on which outcomes should be prioritized while the democratic legitimacy argument fails to adequately identify the relationship between PPI and greater transparency, accountability, or reasonability. Since supporters of PPI often use the framework of deliberative democracy as support for the democratic legitimacy argument, I use it as well as a starting point for analysis. In short, though PPI may appeal to certain democratic intuitions, there is little reason to think that in practice it has strengthened bonds of democratic legitimacy. I conclude by suggesting ways in which those core democratic virtues might be strengthened outside the realm of PPI. Despite increased patient involvement, the processes of resource allocation (rationing) in health care remain opaque in many countries. In addition, there exist few mechanisms for individual appeal of an unjust decision, a feature that most deliberative democrats consider essential to a just system of resource allocation. Ultimately, I contend that a greater focus on the processes that facilitate transparency and accountability will better serve citizens and their health care systems.</p