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Presenting at Harvard's annual health law conference

Oliver's paper was on the legal, ethical, and political ramifications of transparency in healthcare, particularly for consumers. Transparency is likely to be even more buzzed about as health policy and law takes another dramatic turn with the election of Donald Trump and a continued Republican majority in Congress. With this control, Republican officials have promised to repeal and replace the Affordable Care Act, and the idea of transparency—giving consumers more information about their healthcare—is sure to be a part of the agenda. On its face, transparency feels like a good, simple concept to give consumers and patients more tools to make smarter decisions about their care. But there are important consequences and harms that can come from too much unfiltered information. While the healthcare system is moving toward empowering patients and consumers to be more engaged in their own care, unfiltered information is not necessarily the right panacea and unbridled consumerism may cause harm to patients.

First, transparency alone cannot put patients and providers on equal footing, and there needs to be recognition that information needs to be filtered, not completely transparent. Healthcare does not work like other economic goods precisely because the patient does not have the best information. Most patients do not have years of academic and clinical training to inform their decision, and relying on the Internet, rather than trained professionals, can be harmful.

Second, gathering of information can put patient data at risk for exposure and thus hurt patients’ willingness to obtain care or providers’ ability to provide such care. For those seeking care that is still stigmatized (ex. mental health, substance disorder treatment, reproductive health) or at odds with federal policy (ex. care for undocumented immigrants, medical marijuana), a fully transparent system where the government is obtaining information could disrupt services. For example, a growing number of anti-abortion legislation is calling for more information, and Trump famously suggested that there ought to be some sort of “punishment” for some women obtaining an abortion. Such calls for more information—ranging from understanding why a woman might seek an abortion to reduce “sex-selective” abortions to gathering physician-specific data—may have a chilling effect on the practice of abortion.

Third, transparency can threaten to move us away from traditional notions of social insurance and the safety net. Social insurance relies on the idea of pooling risk across a large number of insureds, but consumerism relies on individual choice. Those with the best information—and sometimes the best luck—may do better in a health system based totally on consumerism, something of interest to some Republicans that want to expand consumer-driven policies such as health savings accounts into Medicare and Medicaid.

While such a view may seem paternalistic, there needs to be some realism about the limits of consumers. Patients need providers just as providers need patients, and this relationship should be cherished and strengthened, not weakened. Rather, we should use transparency tools in a way that helps share decision-making between both parties.

Oliver Kim