Two decades ago, the Bush administration threw a wrench in health data privacy, making it possible for many health care organizations to share medical information without patients’ consent so long as it was being used to improve treatment or streamline business operations.
Today, the health data marketplace looks vastly different. Medical records are being amassed by commercial data brokers and sold to insurance companies, and drug and device manufacturers, along with personal information scooped up online. At the same time, patient privacy law is wielded to inappropriately deny patients access to the records that contain some of the most intimate and sensitive details about their own health.
“We need to return the control of medical information to where it always was — before the regulations were changed 20 years ago — which is in the hands of the patient,” said William Yasnoff, an adjunct professor of biomedical informatics and data science at Johns Hopkins University and president of the Health Record Banking Alliance, during a STAT event Wednesday on health data privacy.
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