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Friday, June 23, 2023

In the US, patient data privacy is an illusion

Harlan M Krumholz
BMJ 2023;381:p1225

Here is an excerpt:

The regulation allows anyone involved in a patient’s care to access health information about them. It is based on the paternalistic assumption that for any healthcare provider or related associate to be able to provide care for a patient, unfettered access to all of that individual’s health records is required, regardless of the patient’s preference. This provision removes control from the patient’s hands for choices that should be theirs alone to make. For example, the pop-up covid testing service you may have used can claim to be an entity involved in your care and gain access to your data. This access can be bought through many for-profit companies. The urgent care centre you visited for your bruised ankle can access all your data. The team conducting your prenatal testing is considered involved in your care and can access your records. Health insurance companies can obtain all the records. And these are just a few examples.

Moreover, health systems legally transmit sensitive information with partners, affiliates, and vendors through Business Associate Agreements. But patients may not want their sensitive information disseminated—they may not want all their identified data transmitted to a third party through contracts that enable those companies to sell their personal information if the data are de-identified. And importantly, with all the advances in data science, effectively de-identifying detailed health information is almost impossible.

HIPAA confers ample latitude to these third parties. As a result, companies make massive profits from the sale of data. Some companies claim to be able to provide comprehensive health information on more than 300 million Americans—most of the American public—for a price. These companies' business models are legal, yet most patients remain in the dark about what may be happening to their data.

However, massive accumulations of medical data do have the potential to produce insights into medical problems and accelerate progress towards better outcomes. And many uses of a patient’s data, despite moving throughout the healthcare ecosystem without their knowledge, may nevertheless help advance new diagnostics and therapeutics. The critical questions surround the assumptions people should have about their health data and the disclosures that should be made before a patient speaks with a health professional. Should each person be notified before interacting with a healthcare provider about what may happen with the information they share or the data their tests reveal? Are there new technologies that could help patients regain control over their data?

Although no one would relish a return to paper records, that cumbersome system at least made it difficult for patients’ data to be made into a commodity. The digital transformation of healthcare data has enabled wonderous breakthroughs—but at the cost of our privacy. And as computational power and more clever means of moving and organising data emerge, the likelihood of permission-based privacy will recede even further.