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.'"

If a Medical Doctor was involved in the collection

[WillAdams]

it's a medical record, entitled to the appropriate legal protections and the property of the person to whom it refers.

End of discussion.

Re:If a Medical Doctor was involved in the collect

[MightyMartian]

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.

Say what?

[Errol backfiring]

The U.S. has strict privacy laws

Is that the same U.S. as in all the other posts? Since when has the U.S. any effective privacy laws?

Re:Hello HIPAA!

[taliesinangelus]

There is a large research market for de-identified data, regardless of its source. I suspect that is what is being sold. Even that is fairly well-regulated out of fear of HIPAA if nothing else.

Understand?

[koan]

"Medtronic plan to sell the data but won't provide it to the person who generated it."

Why wouldn't they give you the data you generated? Why is this allowed? Why is patenting human genes going through a supreme court decision? Who in their right minds thinks that will ever turn out well?

Outbreak Early Warning System

[pr0t0]

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.

Re:If a Medical Doctor was involved in the collect

[ColdWetDog]

I think that this is the correct thinking. The location of the data collecting device and the means of transmission make no difference. Whether or not it goes through a 'physician' makes little difference - if it's personally identifiable data, it should be protected.

If you are creating, say a smartphone app that follows your heart beat and respiration over time. Or your weight. Or your level of depression. Or whatever, the company creating the app needs to make it clear who has the data, who can get to the data and for how long. If they want to sell the data to an advertising company, fine, but it has to be upfront (in fact, you might want a cut of the pie).

People toss their private medical data all over the web. I'm always impressed about the number of patients I've seen who want me to take a picture of the large gash on their buttocks so they can put it on Facebook to amuse their friends. That's fine, it's their butt. Everybody else needs written and carefully drafted permissions. Including the implanted stuff.

It's really pretty much of a no brainer.

Re:If a Medical Doctor was involved in the collect

[Bill_the_Engineer]

It already is a political issue, the moment the idiots wanted politics involved in HealthCare. Don't want politics involved, then stop involving politics.

That is a multifaceted statement, so I'm sure it will generate some arguments covering various topics.

First of all, calling anybody an idiot for any reason especially for not agreeing with you is not conducive to a healthy discussion. I only bring this up because name calling plays a major part of the US government being dysfunctional.

There is absolutely nothing wrong with making anything a political issue. This is how a functioning democracy (more accurately republic) works. I'll go out on a limb and state that one major distinction between a republic and a dictatorship is the republic's ability to have political issues. I can only conclude that people who dislike political issues are those that wouldn't mind a dictator as long as that dictator did everything that the individuals wanted despite the fact that they might actually be in the minority of that country's population that agreed. Just reflect on that for a moment. There is no such thing as "I believe in a constitutional government as long as it only does what I believe it should" simply because there are other people involved and a lot of them pay their share of taxes too.

which brings me to this:

This is the full problem of centralizing decision making away from the people.

You have to centralize the decision process in order for political discussion to take place. You have two senators and a several house representatives that bring your local issues to this forum. Every time I see someone say we need to take our freely elected government back, I always ask "from who?".

Anyway back to the real topic -- government has to be involved to protect our rights as patients. Who else should it be?

Re:If a Medical Doctor was involved in the collect

[azadrozny]

You are correct, doctors do this all the time, so they can share case history so that others may benefit from your treatment. However, I believe the concern is with devices that your doctor is not equipped to handle in-house. I believe there are devices that send data automatically to a central location. The data is stored and forwarded to your doctor for review. The question is who owns that stored on the central server? I don't mind the company using that data to monitor the health of my implant, or to improve the device, but should they forward that data to R&D to create new devices? Sounds good, but how about marketing? Now I am a little concerned.