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Privacy Medicine Your Rights Online

Who Owns Your Health Data? 99

Posted by samzenpus
from the every-breathe-you-take dept.
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.'"
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Who Owns Your Health Data?

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  • by WillAdams (45638) on Monday December 03, 2012 @10:20AM (#42168987) Homepage

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

    End of discussion.

    • by MightyMartian (840721) on Monday December 03, 2012 @10:29AM (#42169099) Journal

      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.

      • by ColdWetDog (752185) on Monday December 03, 2012 @11:27AM (#42169881) Homepage

        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.

        • It's a classic example of how IP law works now. In this case "on a computer" is replaced with "in a body".

    • by Bill_the_Engineer (772575) on Monday December 03, 2012 @10:29AM (#42169101)

      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.

      • by pr0t0 (216378) on Monday December 03, 2012 @11:10AM (#42169693)

        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 think the HIPAA rules first allowed for this type of third-party loop-hole but it got fixed.
        Now all companies (not just healthcare) working with patient data must abide by the HIPAA rules.
      • by filthpickle (1199927) on Monday December 03, 2012 @11:24AM (#42169835)
        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.
        • by azadrozny (576352) on Monday December 03, 2012 @12:09PM (#42170409)
          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.
    • Medical devices are often used en-route in an EMS vehicle so no doctor may be involved there. Check out NEMSIS (www.nemsis.org). They collect a lot of EMS data nationally.
      • by Bill_the_Engineer (772575) on Monday December 03, 2012 @10:54AM (#42169431)

        I believe NEMSIS' ultimate goal is to benefit individual patients by providing a mechanism to share en-route EMS data to participating hospitals and the various health departments.

        This may be different than the goals of the medical companies mentioned in the article that may benefit pharmaceutical companies or others.

        In other words, NEMSIS seems to be enforcing a data format that enables the transfer of data between medical participants (directly benefits patient and others may benefit indirectly from the government agency monitoring), while the companies mentioned in the article are trying to market the data that they have collected (directly benefiting themselves and others may benefit indirectly from advances made in medical science from aggregated data being sold).

        • They collect the data as well and share it (de-identified) for research in addition to their role as a format arbiter. It is technically a medical record collected and stored outside a doctor-patient relationship - just making sure that folks realized that fact.
          • That is good to know and the discussion on the ethics behind them sharing aggregate medical data outside of their duties as format arbiter is just as applicable.
      • by WillAdams (45638)

        I've never seen an ambulance system which didn't have an MD as an advisor, and where is one taking the patient but to a doctor at an emergency room?

        • Sure, MD advisor if needed, usually by phone or the like, but they do not sign off on all patient care reports - at least not in the majority of states in the U.S. Patient care reporting for EMS usually ends at the end of transport, mainly because they charge for "loaded mileage." The ER will have their record and the EMS agency its record.
          • And a followup to the doctor thing - transports can be made to facilities without doctors. Usually this is a nursing home or the like. EMS can still administer some medications and do some procedures (depending on Medical Control rules) en route to those facilities.
            • by WillAdams (45638)

              Again, I've never seen a nursing home which didn't have at least a consulting physician.

    • by mr1911 (1942298)

      End of discussion.

      You have no appreciation for what will happen when this becomes a political issue.

      • Re: (Score:2, Interesting)

        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.

        • by Bill_the_Engineer (772575) on Monday December 03, 2012 @11:34AM (#42169979)

          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?

          • by Idiot, I mean people who want politics involved in heath care decisions, then complain and whine about healthcare being politicized. They are idiots because they want their cake and eat it too. If you want politics involved, you have no right to complain when politics are involved. I don't understand why this isn't clear. Either have politics involved, or don't. But don't complain when you can't have it both ways, they are mutually exclusive. This is a binary choice. I know that plenty of people think th

          • by oboeaaron (595536)

            Every time I see someone say we need to take our freely elected government back, I always ask "from who?".

            http://www.opensecrets.org/politicians/ [opensecrets.org]

        • by dkleinsc (563838) on Monday December 03, 2012 @11:47AM (#42170173) Homepage

          It already is a political issue, the moment the idiots wanted politics involved in HealthCare.

          If they're idiots, why is it that health care with lots of government involvement has better patient outcomes for lower costs?

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

          The problem with patients making all the key decisions is that patients as a rule (a) don't have a clue what they're deciding, (b) have no idea what it costs, (c) would as a rule pay any price to not die, and (d) don't always have cash on hand when they would need to pay the price to not die. Those are the basic reasons why free markets don't produce optimal outcomes for health care.

          • by Twanfox (185252)

            I hope you're making a mistake in saying that patients don't make all the key decisions about health care, at least when it comes to their own care. See, most hospitals I've ever gone to have this big thing about consent. You must consent to care before it will be given. Sometimes that consent is pretty broadly written, but consent can be dialed back to only those things you actually consent to. To the point about whether they know what they're deciding or not, that doesn't matter from this standpoint becau

          • "If they're idiots, why is it that health care with lots of government involvement has better patient outcomes for lower costs?"

            Complete and utter lack of free market would have better care and results at lower costs. Lasik eye surgery is one such micro economic example. The cost is not borne by Insurance and you can have excellent care, at a definitively affordable price in just about any city in the USA. The US health care system is rife with inefficiencies of Insurance and regulation that places like Can

    • Apparently, she didn't read the EULA.
    • by sirlark (1676276)
      I'd actually expand this idea. If you pay for the medical service, that information is commsioned work and you own the copyright on it (yeah, yeah, can't copyright facts), but I'm saying the principle should apply in this case too. You pay for the device, you pay for the service, you comission the information... It's not their's to do with as they please, it's yours!
    • by Kittenman (971447)

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

      End of discussion.

      Not so. When I emigrated from the UK, I asked my doctor for a copy of my records for myself, so that I could pass them onto my new doctor in NZ. Sorry, I can't do that, he replied.

      He might have been yanking my chain, but he offered to give me a summary of my medical history for the new guy - which was more work.

    • by G3ckoG33k (647276)

      It could also be Google.

      If the doctor used Google Drive he may have given up those rights you referered to, only so that Google should be able to store that data at various servers around the world at their own accord.

      If it is a US citizen it may perhaps be less complex, as they technically all you are belong to us Nigeria; I have eleven e-mails from a billionaire to prove that.

  • by zifferent (656342) on Monday December 03, 2012 @10:21AM (#42169013)
    Unless they are selling the data in aggregate how is it legal to sell personally identifiable medical data? I can't imagine that their lawyers are on board with this plan to monetize patient data.
    • Re: (Score:3, Insightful)

      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.
      • 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.

        Yet it's still a federal offense to file serial numbers off guns, even though there is a large market for de-identified guns.

        • I suppose there could be some use for de-identified weapons in research. Not sure what that would be though.
        • by tnk1 (899206)

          In this case, I would think you'd want the personalized information removed, unlike on a weapon, since the idea is to provide privacy, rather than to provide responsibility for its use. Just saying.

          • Serial numbers on a gun by no means 'provide[s] responsibility for its use' - registered firearms are used for irresponsible shit every day.

            The use isn't the point, anyway - the point was, why is it (legally) OK for third parties to sell my information by "stripping it of identifiable data," but I can't do it myself? In other words, if you or I were to "strip personally identifiable information" from a gun, then try and sell it, we'd be looking at hard time in federal pound-me-in-the-ass prison, but whe
            • by tnk1 (899206)

              Well... guns can kill people and although I'm generally in favor of the right to bear arms, they do need some control. The fact that registered weapons can fall into the hands of others or have the serial numbers filed off is beside the point. Your data is only going to actually affect you if you can be identified by it, which means you want the opposite of registration.

              As for your own data, I understand that you see people making money off you, but they really aren't making money off of you as they are f

              • Well... guns can kill people

                No, they don't.
                looks at his gun Gun: Go kill someone!
                ... gun does not respond

                see?

                FYI, improperly designed medical implants really can kill people without outside intervention, unlike a gun.

                As for your own data, I understand that you see people making money off you, but they really aren't making money off of you as they are from operating equipment that can make those observations.

                Observations provided by me, my body, through a device I had to pay to have implanted.

                What part of that sounds like I shouldn't be compensated? Hell, at least Google has enough conscience to give me a friggin' email account in exchange for mining my data, and they aren't even sticking their products in my chest.

                I suppose that you could sell it, but I really don't see the harm in them using aggregate data that you are a part of, as long as you are in no way associated with it.

                T

  • Say what? (Score:4, Insightful)

    by Errol backfiring (1280012) on Monday December 03, 2012 @10:30AM (#42169115) Journal

    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?

  • Easy answer (Score:5, Funny)

    by Applekid (993327) on Monday December 03, 2012 @10:42AM (#42169275)

    According to Betteridge's law of headlines, the answer to "Who Owns Your Health Data?" is "no".

  • by ohnocitizen (1951674) on Monday December 03, 2012 @10:44AM (#42169313)
    Until someone in the government takes the initiative and moves to protect consumer rights explicitly, or a lawsuit addresses the issue directly - this is a massive opportunity for a company like Medtronic with ethics. Medical data is very clearly private, and accessible to patients. This is very clearly medical data. If I had a company that competed with Medtronic I'd be looking to launch a marketing campaign:

    "When other health device companies sell data they won't let you see, why spend your money with a company you can't trust? With MedicalCompany, your data is your own."
    • by Fnord666 (889225)

      "When other health device companies sell data they won't let you see, why spend your money with a company you can't trust? With MedicalCompany, your data is your own."

      But in order to be profitable you would have to charge more for your services that Medtronic. At that point you become "out of network" for the insurance providers and the government programs that care only about the least expensive service. Your health insurance company does not care what the service provider does with your data. In fact, they are probably one of the customers buying your medical data so they know if they want to continue covering you next year. Don't like it? Choose to self-insure.

  • What rights? (Score:5, Informative)

    by anorlunda (311253) on Monday December 03, 2012 @10:48AM (#42169359) Homepage

    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.

    • by koan (80826)

      "Data (information, facts) are not property and can not be owned"

      I think just about every single government organization and corporation throughout history is laughing at that comment.

    • by geek (5680)

      You're wrong on every single level. HIPPA applies to all records regardless of source. Just ask any HR department of any company anywhere in the US. I'm routinely dealing with HIPPA requirements in my IT department and we do nothing with the medical industry. Sorry but tossing out this type of nonsense is irresponsible.

      • Re:What rights? (Score:4, Informative)

        by Chris Mattern (191822) on Monday December 03, 2012 @11:31AM (#42169939)

        Actually, no, he's mostly right, to my surprise. From http://www.hhs.gov/ocr/privacy/hipaa/understanding/coveredentities/index.html [hhs.gov]:

        "The Privacy and Security Rules apply only to covered entities. Individuals, organizations, and agencies that meet the definition of a covered entity under HIPAA must comply with the Rules' requirements to protect the privacy and security of health information and must provide individuals with certain rights with respect to their health information. If an entity is not a covered entity, it does not have to comply with the Privacy Rule or the Security Rule."

        The one thing he got wrong is that while the life insurance company's use of health information is not covered by HIPAA, the medical information clearinghouse *is*, as such clearinghouses are "covered entities" (along with health care providers and health plans--while your life insurance isn't covered by HIPAA, your health insurance is).

         

      • You're wrong on every single level. HIPPA applies to all records regardless of source. Just ask any HR department of any company anywhere in the US. I'm routinely dealing with HIPPA requirements in my IT department and we do nothing with the medical industry. Sorry but tossing out this type of nonsense is irresponsible.

        Ironically, that's precisely the type of nonsense Medtronic is using to justify their own actions.

    • by TheSpoom (715771)

      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.

      MIB Group, Inc. [wikipedia.org], claiming the title for creepiest business name in the health industry.

    • by Anonymous Coward

      Not "HIPPA"... just so you know.

      * What is it they say around here, acronym-wise? Oh, yea - "FTFY"...

      APK

      P.S.=> I used to work for a fairly large insurer doing data processing oriented programming for conforming to the regulations it imposed...

      ... apk

  • Understand? (Score:3, Insightful)

    by koan (80826) on Monday December 03, 2012 @11:00AM (#42169553)

    "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?

    • by greg1104 (461138)

      The problem is right in how you're asking the question: "why wouldn't they give you the data you generated". That word, "give", it implies something you get for free. Why would you expect companies would do that? Nothing in it for them. The only way to get access to the data is to pay for it, with a trip to your doctor's office for example.

  • I do. I'd like to hear any argument suggesting that it is not mine.
    • by taliesinangelus (655700) on Monday December 03, 2012 @11:45AM (#42170141)
      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.
  • by prefec2 (875483) on Monday December 03, 2012 @11:27AM (#42169877)

    Recently, I visited my doctor. He needed information from my former doctors and hospitals. I asked him, if it would not be easier when he would ask and I would provide the addresses. As I thought the data was owned by those doctors and hospitals. He informed me, that this would be complicated and he would require a permission signed by me for every data record. However, I could get everything just be call or mail, as I am the owner of my data. This is at least valid for Germany. The data is cannot be passed to the health insurance nor to any other organization. Especially not without my permission. Furthermore, other institutions are not allowed to ask for such information. The only exception so far are private/commercial health insurance companies. Thanks god we have that community/state driven system.

    • Re: (Score:3, Informative)

      by BetaDays (2355424)
      A few years ago I was in the position of changing doctors and had a very hard time getting my data from my old doctor to the new. I had to constantly go after them to get copies. They kept putting it off and at one point said they owned the records since they prescribed any and everything medical for me. I explained that I owned my records, they may own the paper printed but the information is mine. I bought and paid for the tests and I paid the doctor to decide what tests needed to diagnose my problems and
  • I'm sure that this will all end well for consumers if you just let the capitalist system work. We don't need any business-crippling regulation about ownership and rights. I'm sure if the company who sells implantable devices that keep people from dying stops having people buy their product, they'll loosen up their terms. When it's your life or your data, just tell them you'd rather die. After a few years, if everybody died instead of giving in, the company would have to change their policies or go out of bu

  • These devices shouldn't be shipping anything sensitive into the "the cloud" in the first place. They should be delivering the data to local readers operated by patients and/or doctors... who may or may not then choose to give some information to the device builders and/or to others.

    That's where regulation should be aiming: total local patient control from the get-go.

  • I've long since had a problem with a doctor or doctor's office claiming they own my health data. I pay them for a service, and thus what they tell me should be between my provider and myself. Once I'm finished with my appointment. I should be leaving the office with a copy of the diagnosis and treatment suggested. If I make an agreement with my doctor to receive medical payment from my insurance company, then my doctor may send a copy of that visit information to my insurance company. And if I feel it i

  • I have a cold with congestion and my tummy hurts.

    There /., you now have my medical record. I hereby require you to keep this post retrievable by me for at least the next 7 years.

  • by Anonymous Coward

    This kind of intellectual gymnastics is a perfect example of taking something simple and making it complicated.

    I pay for my insurance, I am the customer and the insurance is my agent. I own whatever I pay for.

    Except when its not profitable for the company that did not design the data collection properly to be easily produced upon request.

    I don't care if its machine code.... if my body generated during my treatment, again which I paid for I should have no problem at all getting my data.

    How stupid is this?

    Abo

  • No one owns data. What you mean to ask is "Who should have access to your health data?"

  • However I am also pretty sure that with the state of health "care" in Canada, nobody knows where your health data is anyways. They couldn't even send my health card renewal notice to the correct address. Psst, its the same address I have been paying excessive taxes from for the last 10 years.

Nobody's gonna believe that computers are intelligent until they start coming in late and lying about it.

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