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Who Owns Your Health Data?
porsche911 writes "The Wall Street Journal has an interesting article about how the data from Implanted health devices is managed and the limitations patients run into when they want to see the data. Companies like Medtronic plan to sell the data but won't provide it to the person who generated it. From the article: 'The U.S. has strict privacy laws guaranteeing people access to traditional health files. But implants and other new technologies—including smartphone apps and over-the-counter monitors—are testing the very definition of medical records.'"
it's a medical record, entitled to the appropriate legal protections and the property of the person to whom it refers.
End of discussion.
Sphinx of black quartz, judge my vow.
Yup. Why would it be any different than the printout of an ECG or an image from an MRI? Just because it's inside the body doesn't make it something other than a medical device.
The world's burning. Moped Jesus spotted on I50. Details at 11.
I'm more concerned about a third-party selling my data. All medical information should only be between the doctor and the patient. Any intermediaries should have limits that prevent them from sharing the data with anyone other than the patient or the doctor (who is really acting on behalf of the patient). If there is a loophole that allows companies like Medtronic to sell patient data then congress should address this (I can't even type this with a straight face).
I'd thought these limitations are already in place and data from medical devices would be covered like data from labs and radiologists.
These comments are my own and do not necessarily reflect the views or opinions of my employer or colleagues...
According to Betteridge's law of headlines, the answer to "Who Owns Your Health Data?" is "no".
More Twoson than Cupertino
HIPPA only applies to health care providers. Anyone else who gets your data by any means, is not restricted by HIPPA. Notable examples are life insurance companies. You sign a waiver to give them access to your health info to qualify for a policy. After that they can do whatever they want with the data. They can, and do, routinely pass it along to a medical information clearing house in Massachusetts (I forget the name of it), which is a third party. The clearing house dishes out the information (including personal identifying information) to anyone who wants to pay for it.
Americans imagine that they own their personal data. Data (information, facts) are not property and can not be owned. Intellectual property laws bestow some rights but not "ownership" You can own the rights but not the facts. If you could own facts, then you could prevent police and courts from using facts about your behavior against you.
Records, on the other hand are ordinary property. Whoever owns the records can treat them like any other property, regardless of the information they contain (exceptions for national security, for parties covered by HIPPA, records under subpoena and so on). There was once a notable case of a hospital in Las Vegas. They rented a warehouse to store paper patient records. They failed to pay the rent. The landlord sold all property stored in the warehouse to recover money owed to him. Neither the landlord, nor any subsequent owner of those paper records was restricted in any way as to what they could do with them.
I wouldn't want my data sold to anyone...ever...period!
However as real-time monitoring devices become more prevalent, more precise, and more capable; I can see a strong argument made for the data being captured and analyzed in aggregate by "trusted sources". The CDC could get an early warning of an outbreak, or it could be found that a disproportionally large number of people in a small town are getting cancer due to poor working conditions in a factory or pollution.
As with any data collection tool, it has as much potential to harm as it does to help...but so does a hammer.
I'm sorry, but your opinion seems to be wrong.
They remove anything that can identify you before they share it. The aggregate is what everyone wants to see. That is how they would get around anything short of being expressly forbidden to do anything at all with the data.
The only one I can come up with prima facie is that the health of one may affect the health of many. Tracking the vectors of diseases and shaping responses to them seems to be an appropriate function of a state-level health organization. For that reason at least part of your health data is not your own in the sense that you have full control of its dissemination. The benefits of knowing that piece seem to outweigh individual control of that data. There is always the possibility of a quarantine situation in which individual rights may be further constrained so there is certainly room for more oversight as to the specific implementation of this with that state-level organization.