Information is power, and in these uncertain times when we feel weak we want the power that information gives us. Unfortunately, our desire for information clashes with the privacy rights that individual patients have.
HIPAA, an acronym for the Health Insurance Portability and Accountability Act, passed in 1996, ensures the privacy of medical information for individual patients except in limited circumstances.
This is especially frustrating during the coronavirus pandemic. The U.S. Department of Health and Human Services has issued a set of guidelines to help doctors, healthcare organizations, and the public understand what information can and cannot be released. You can find those guidelines in their entirety here.
In a nutshell, the rule, according to the guidelines, is this: “The HIPAA Privacy Rule protects the privacy of patients’ health information…but is balanced to ensure that appropriate uses and disclosures of the information still may be made when necessary to treat a patient, to protect the nation’s public health, and for other critical purposes.”
So what does that mean in English? It means that the individual patients’ information is protected, but if there are details that need to be shared in order to protect the greater good, those details can be shared. It’s a balancing act that is difficult to balance. That’s why, if you look at the daily reports, you can see generalized statistics like gender, age, general location, and sometimes race or ethnic background. You won’t, however, find identifying information. It is important for epidemiologists, the scientists who study how disease spreads, to understand which populations are most susceptible, and to trace the origins of the spread so they can figure out how best to stop it.
It is natural, however, for us as a community to want to know who has the virus. What neighborhood did they live in? Did that particular person come into contact with us? Go to school with our children or shop in our grocery store? Were they vulnerable in a way we weren’t? It is frustrating when we ask those questions of the media and medical professionals and politicians and they won’t give us direct answers. It isn’t because they aren’t doing their jobs or because they are trying to keep secrets: it is because they can’t. HIPAA only allows so much information to be released.
The law has determined that a person who is sick or who has died and their loved ones have a right to privacy. If the individual or their next of kin want to announce the details, they can. Otherwise, the doctors and/or media cannot do it for them without violating the law.
The rule of law is always compromise. Rights to privacy always bump up against rights to know. In this case, however, we are lucky because we don’t have to guess where the line is, HIPAA draws it for us clearly.
Nothing in this article should be construed as legal advice. It is being offered for informational purposes only.