Disregarding Uncertainty, Marginalizing Patients
What does it mean to “trust the science”? The phrase is often used to suggest that scientific knowledge is static and that the public can treat current recommendations as eternal verities. The medical community is not omniscient, however. Indeed, some illnesses are characterized by uncertainty: it is not clear with what frequency the associated symptoms occur or whether they are a manifestation of a psychological disorder or a physiological disease. The medical field is no stranger to such challenges, labeling such illnesses as “contested.” The communication of uncertainty surrounding these illnesses, however, presents a troubling dynamic. Rather than engaging in constructive dialogue that moves scientific understanding forward, viewpoints become entrenched, points of disagreement are obscured, and professionals retaliate against one another. In the best case scenario, patients are merely left to sort through dense medical concepts on their own; in the worst case, they are targeted by predatory providers. Patients suffer, trust in science declines.
Drawing on insights from the economics literature, this Article presents a theoretical framework for approaching the uncertainty inherent in contested illnesses. The framework discusses the pattern of evidence accumulation that accompanies an uncertain illness, distinct from that of a disease where uncertainty is substantially resolved. Applying these insights to the communication of uncertainty surrounding contested illnesses, the Article notes that null results in the presence of well-designed studies should be weighed differently than null results in the presence of case studies or small sample studies. If an illness is truly uncertain, the framework highlights the potential benefits of additional caution in approaching irreversible actions, such as prematurely communicating the resolution of uncertainty (which can lead to the development of patient mistrust). This careful communication of uncertainty is vital to prevent patient marginalization and to clarify the often-inscrutable information landscape in these contexts. Current regulations for medical providers and public figures are insufficient, however, to incentivize such careful communication. This Article proposes a government-coordinated informational digest that weighs existing evidence based on the rigor of study design and imputes null results to missing results of completed studies. The agency coordinating the digest will provide incentives for studies that fill gaps in the literature and which incorporate input from patient advocate groups into the design. In doing so, it will enable the medical community to both better handle existing uncertainty and to take important steps toward resolving it. More importantly, however, this transparent process educates the public about how scientific beliefs should evolve and prevents the irreversible harm of patient marginalization.