With the quick expansion of technology in the medical field, healthcare providers and patients are now relying on a new type of medical information system called an EHR, or Electronic Health Records. Patients are constantly being exposed to new forms of technology to help with keeping track of their health and exercise, often in the form of an exercise tracker or a mobile patient app from which they can access their medical records. With the rise of this new type of information gathering comes a serious privacy question- where does all this medical information go, and who owns it?
Who owns my personal medical data?
In almost every state, the laws do not clearly identify whether the patient or the healthcare provider owns personal medical data, or they state that the healthcare provider is the owner of that information. New Hampshire is the one exception and clarifies that the patient owns all their own medical data rather than their provider. In states where the provider owns the data, they will commonly sell the data to analytics companies, other healthcare providers, or pharmaceutical companies who then take ownership of that data to use for their own research purposes.
What kinds of data are collected? (Personal vs. Medical)
As many consumers are aware, many of our electronic devices monitor our browsing patterns, location, voice commands, and even shopping habits. All of this information is also collected and sold to companies in order to direct relevant advertisements and information to you. This is called personal data, and refers to data relevant to your person, such as your address or internet history. Similarly, medical data can contain some of that personal information, but focuses more on the actual raw medical information about an individual that can be valuable in the medical information field.
Should big business be allowed to sell our data?
There are a number of pros and cons to big businesses selling data, with many proponents on both sides of the argument. For some, the idea of big business being involved in personal health information appears too invasive. They argue that based on the way the laws are written, healthcare providers would theoretically alter patient medical records without informing the patient first. Although this is a major concern for some, the benefits of such a system could be quite drastic. For example, if big businesses exchanged that information to further medical research and new treatments, the outcomes of that research could have a positive impact on public health.
On the flip side, proponents of private ownership argue that the allowing individuals to own their own information gives them the autonomy to do whatever they’d like with that information. However, others argue that patients being the owners of their own medical data could be just as harmful. For example, a patient with access to their own records could modify them to qualify for a more comprehensive insurance plan. That could have a negative impact on the medical industry and constitutes insurance fraud.
Since there are pros and cons to either having the patient or the provider be named the sole owner of the data, some individuals advocate for a more collaborative approach. In this scenario, both parties would be referred to as ‘stewards’ of that information instead of owners, allowing all involved parties to share in the profits of the sale of that information. This would give the patients the ability to control how and when their data would be sold, while also still allowing medical providers to profit off of data collection and create new treatments based on that data.
The advent of new technologies is exciting, but we still have a lot to unravel. As we continue to learn more about information gathering and the benefits or downsides of mass data collection, it may become more apparent which one of these policies serves the greater good.