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.'"

Re:If a Medical Doctor was involved in the collect

[Bill_the_Engineer]

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.

Re:If a Medical Doctor was involved in the collect

[Archangel Michael]

It already is a political issue, the moment the idiots wanted politics involved in HealthCare. Don't want politics involved, then stop involving politics. This is the full problem of centralizing decision making away from the people.

Re:Who Owns Your Health Data?

[taliesinangelus]

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.

Re:Understand?

[greg1104]

I didn't say I was OK with anything. I stated the reality of the corporate position here. There are two main ways to get something out of a corporation. You can pay them for it, or you can legislate a rule so that they're required to provide it--which will then be passed along as a cost of doing business. Since neither of those are involved when a person requests their own medical data, of course the company says they can't have it right now. You are not a paying customer to them, so they have no incentive to make you happy.

The way health insurance in the US works, people are covered only if medical work goes through their doctor, and there is no incentive for the patient to improve their own care. In fact several of the corporate entities here are actually motivated against you getting better through self-care, the pharmaceutical companies being the most obvious one. Until you understand how the system is constructed and works already, you're not going to bust down any of the many barriers set to block empowered patients from doing anything on their own.

P.S. not all of those barriers are even a bad idea. Left on their own, many people prefer slickly sold snake-oil to real medicine. If I were at the company providing this heart product, I could easily construct a scary story about how people who can see their own data will skip regular check-ups because they think they know everything. And in some cases, that's exactly what will happen here.