The suit challenges civil rights regulations that prohibit hospitals from selling online health tracking data to Big Tech, insurance companies, and vendors via third-party trackers.
The popularity of telehealth has surged since the onset of the COVID-19 pandemic, leading more Americans to seek and receive medical care through hospital system websites. The Health Insurance Portability and Accountability Act (HIPAA) safeguards patients by preventing doctors and clinics from disclosing any health data from their electronic medical records. However, it may come as a surprise to many that over 98 percent of acute care hospitals employ third-party tracking to sell data, including searches within a hospital's website and the ability to track a patient's physical location, to companies such as Meta.
Personal health information is a valuable commodity for those who can sell it to entities like local medical services providers. Beyond connecting patients with care and products they may wish to purchase, the data can also be exploited in other ways. For example, insurance companies or potential employers could use a person's searches to infer a possible health condition and label them as a potential risk. Moreover, treatments suggested to a patient through the sale of their searches could contradict their doctor's care and treatment plan.
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The Biden administration deserves some recognition for this rare instance of patient protection. However, they fall short of full credit because they are targeting the wrong side of the issue. The relentless hunger of Big Tech for more and more of our most personal data is the driving force behind this problem. They, not the hospitals, should bear the consequences for their attempts to sidestep HIPAA. This does not absolve hospitals of their responsibility to protect data, but it does acknowledge where the money is coming from.
November 16, 2023
Consider a scenario where you have a telehealth appointment with a counselor to address anxiety. You log into a secure portal on the health system website for the session. After logging out, you search "bipolar diagnosis," "psychotropic side effects," and "hospice care" within the health system's website. You then visit a psychiatric clinic. Until the Biden administration's 2022 rule, the hospital could track and sell data related to your online activity and physical movements. Your tracking could reveal as much, if not more, information as your medical chart. The Texas lawsuit seeks to overturn this restriction.
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Patients are justified in their belief that their data should not be sold to the highest bidder just because they log out of the password-protected area of the healthcare site while trying to learn about their conditions and arrange care.
The boundary between HIPAA-protected and "fair game" data became less clear during the COVID-19 emergency declaration when restrictions were eased to allow more people to access care via telehealth. The success of telehealth during the pandemic has prompted many states to maintain relaxed restrictions on virtual care and expand its use, creating more opportunities for the legal sale of medical data.
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The AHA and Big Tech argue that this practice simply aims to enhance the user experience by tailoring services to align with searches. As for selling the ability to track a patient's physical location, the AHA asserts this is solely to provide information such as "bus schedules or driving directions to and from a community member's location."
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In 2021, Mass General Brigham and the Dana-Farber Cancer Institute agreed to pay an $18 million settlement to patients who alleged their medical privacy was breached. The plaintiffs claimed that the hospitals lacked consent when using third-party tracking tools, including cookies and tracking pixels, while patients were on the website. No hacking or breaches of HIPAA-protected information in the patient's chart occurred. Costco was also sued for selling health data to access customer searches and "highly personal medical information" through the company's pharmacy.
Hospitals and their patients stand to lose a great deal when Big Tech encroaches on patient health data. States should strive to preempt this protracted federal battle and protect patient data.
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