Computational innovation may improve health care by creating stores of data vastly superior to those used by traditional medical research. But before patients and providers “buy in,” they need to know that medical privacy will be respected. We’re a long way from assuring that, but new ideas about the proper distribution and control of data might help build confidence in the system.
William Pewen’s post “Breach Notice: The Struggle for Medical Records Security Continues” is an excellent rundown of recent controversies in the field of electronic medical records (EMR) and health information technology (HIT). As he notes,
Many in Washington have the view that the Health Insurance Portability and Accountability Act (HIPAA) functions as a protective regulatory mechanism in medicine, yet its implementation actually opened the door to compromising the principle of research consent, and in fact codified the use of personal medical data in a wide range of business practices under the guise of permitted “health care operations.” Many patients are not presented with a HIPAA notice but instead are asked to sign a combined notice and waiver that adds consents for a variety of business activities designed to benefit the provider, not the patient. In this climate, patients have been outraged to receive solicitations for purchases ranging from drugs to burial plots, while at the same time receiving care which is too often uncoordinated and unsafe. It is no wonder that many Americans take a circumspect view of health IT.
Privacy law’s consent paradigm means that, generally speaking, data dissemination is not deemed an invasion of privacy if it is consented to. The consent paradigm requires individuals to decide whether or not, at any given time, they wish to protect their privacy. Some of the brightest minds in cyberlaw have focused on innovation designed to enable such self-protection. For instance, interdisciplinary research groups have proposed “personal data vaults” to manage the emanations of sensor networks. Jonathan Zittrain’s article on “privication” proposed that the same technologies used by copyrightholders to monitor or stop dissemination of works could be adopted by patients concerned about the unauthorized spread of health information.