Are we truly anonymous in public health databases?
By Anonymous | June 18, 2021
As a user and as a patient, we have to share a lot of personal and sensitive information when we see a doctor or healthcare practitioner in order for them to provide precise and useful healthcare services to us. Doctors might know about our blood type, potential genetic risks or diseases in our family, pregnancy experiences, etc. Not only those, the health institutions behind doctors also keep records of our insurance information, home address, zip code, payment information. Healthcare institutions might hold more comprehensive sensitive and private information about you than any of those organizations who also try to retain as much information about you.
In addition to above expected usage of your healthcare data, Sutter also mentioned that they are allowed to share your information in “ways to contribute to public good, such as public health and research”. Those ways include, “preventing disease, helping with product recalls, reporting adverse reactions on medications, reported suspected abuse, …”. One concern arising from one of the usage — public health and research, can we really be anonymous in the public database?
In fact the answer is no. Most of the healthcare records can be de-anonymized through information matching ! “Only a very small amount of data is needed to uniquely identify an individual. Sixty three percent of the population can be uniquely identified by the combination of their gender, date of birth, and ZIP code alone”, according to a post on Georgetown Law Technology Review published in April 2017. Thus, it is totally possible for both people with good intentions such as a research team and data scientists whose true intention is to provide public good, or people with bad intention, such as hackers, to legally or illegally get healthcare information from multiple sources and aggregate together. And in fact they can be-anonymous the data, especially with the help of current computing resources, algorithms, and machine learning.
So do companies that hold your healthcare information have to follow some kind of privacy framework? Are there laws out there to regulate companies who have your sensitive healthcare information and protect the vulnerable public like you and me? One guidance that most healthcare providers should follow is the Health Insurance Portability and Accountability Act (HIPAA), which became effective in 1996. This act stated who has rights to access what kind of health information, what information is protected, and how information should be protected. It also covered who must follow these laws, including Health plans, most healthcare providers, and health care clearinghouses, and health insurance companies. Companies that could have your health information and do not have to follow these laws include life insurers, most of the schools and school districts, state agencies like child protective services agencies, law enforcement agencies, and municipal offices.
Normal people like you and me are vulnerable individuals. We don’t have the knowledge, patience, and knowledge to understand every term stated in the long and full-of-law-jargon user agreement and privacy policies. But what we can do and should do is advocate for strong protection for our personal information, especially sensitive healthcare data. And government and policy makers should also establish and enforce more comprehensive privacy policies to protect everyone, to limit the scope and ability of healthcare data sharing thus to prevent de-anonymous events from happening.
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