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Who Owns Your Health Data?

samzenpus posted about a year and a half ago | from the every-breathe-you-take dept.

Privacy 99

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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99 comments

If a Medical Doctor was involved in the collection (5, Insightful)

WillAdams (45638) | about a year and a half ago | (#42168987)

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 (4, Insightful)

MightyMartian (840721) | about a year and a half ago | (#42169099)

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.

Re:If a Medical Doctor was involved in the collect (3, Insightful)

ColdWetDog (752185) | about a year and a half ago | (#42169881)

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 (2)

MightyMartian (840721) | about a year and a half ago | (#42170203)

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

Re:If a Medical Doctor was involved in the collect (5, Interesting)

Bill_the_Engineer (772575) | about a year and a half ago | (#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.

Outbreak Early Warning System (5, Insightful)

pr0t0 (216378) | about a year and a half ago | (#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.

Re:If a Medical Doctor was involved in the collect (1)

tommeke100 (755660) | about a year and a half ago | (#42169703)

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.

Re:If a Medical Doctor was involved in the collect (4, Informative)

filthpickle (1199927) | about a year and a half ago | (#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.

Re:If a Medical Doctor was involved in the collect (3, Insightful)

azadrozny (576352) | about a year and a half ago | (#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.

NIH guide to HIPAA privacy exceptions (0)

Anonymous Coward | about a year and a half ago | (#42173685)

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.

Wrong. NIH has posted a guide to all the privacy protection exemptions written into HIPAA for researchers, doctors and databanks http://privacyruleandresearch.nih.gov/research_repositories.asp [nih.gov]

Who would have thought that "tissue banks" do NOT have to comply with HIPAA?

Re:If a Medical Doctor was involved in the collect (0)

Anonymous Coward | about a year and a half ago | (#42170105)

As the content creator (via the artistic channel of a medical implant) shouldn't this be protected under copyright?

Re:If a Medical Doctor was involved in the collect (0)

Anonymous Coward | about a year and a half ago | (#42169105)

Citation...?

Re:If a Medical Doctor was involved in the collect (2)

taliesinangelus (655700) | about a year and a half ago | (#42169171)

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.

Re:If a Medical Doctor was involved in the collect (0)

Anonymous Coward | about a year and a half ago | (#42169287)

Ok, lets change Doctor to Medical Professional.

Re:If a Medical Doctor was involved in the collect (1)

Smallpond (221300) | about a year and a half ago | (#42171663)

HIPAA rules apply to "health care providers" which is even more general. It includes doctors, nurses, EMTs and even medical device manufacturers under some circumstances.

Re:If a Medical Doctor was involved in the collect (3, Informative)

Bill_the_Engineer (772575) | about a year and a half ago | (#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).

Re:If a Medical Doctor was involved in the collect (1)

taliesinangelus (655700) | about a year and a half ago | (#42169843)

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.

Re:If a Medical Doctor was involved in the collect (1)

Bill_the_Engineer (772575) | about a year and a half ago | (#42170085)

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.

Re:If a Medical Doctor was involved in the collect (1)

WillAdams (45638) | about a year and a half ago | (#42170473)

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?

Re:If a Medical Doctor was involved in the collect (1)

taliesinangelus (655700) | about a year and a half ago | (#42170545)

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.

Re:If a Medical Doctor was involved in the collect (1)

taliesinangelus (655700) | about a year and a half ago | (#42170647)

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.

Re:If a Medical Doctor was involved in the collect (1)

WillAdams (45638) | about a year and a half ago | (#42180329)

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

Re:If a Medical Doctor was involved in the collect (1)

mr1911 (1942298) | about a year and a half ago | (#42169443)

End of discussion.

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

Re:If a Medical Doctor was involved in the collect (1, Interesting)

Archangel Michael (180766) | about a year and a half ago | (#42169511)

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:If a Medical Doctor was involved in the collect (3, Insightful)

Bill_the_Engineer (772575) | about a year and a half ago | (#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?

Re:If a Medical Doctor was involved in the collect (1)

Archangel Michael (180766) | about a year and a half ago | (#42171721)

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 they can "nuance" this point, but really that is just naive.

The problem with your premise, is not everything needs be political, and some things should never be politicized. Functioning democracy doesn't need to butt into my personal life on every damn issue, be it (R) right wingers or (D) Left wingers dictating life choices to everyone else.

Government should be involved in privacy protection, but we don't need more laws for protecting privacy. What we need is an informed electorate that understands its rights and demands them from the people that serve them, government or private party. The fact that people can and think it is okay to sell this kind of info is telling that we have a bigger problem than "privacy". We have a problem with basic understanding of how responsible people behave in society.

Re:If a Medical Doctor was involved in the collect (1)

oboeaaron (595536) | about a year and a half ago | (#42177957)

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]

Re:If a Medical Doctor was involved in the collect (3, Informative)

dkleinsc (563838) | about a year and a half ago | (#42170173)

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.

Re:If a Medical Doctor was involved in the collect (1)

Twanfox (185252) | about a year and a half ago | (#42171057)

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 because if they don't understand, the professional advising them should do their best to inform them the implications of what was found, what the outcomes are, and what can be done to treat it. That turns simple consent into 'informed consent', a term brandished about the profession.

The decision on what to do ultimately rests with the patient, as the patient must give consent for it. If you don't include consent into the mix for patient care, then you subjugate anyone with a 'medical ailment' to someone else's will and force on them something they may not want. Last I checked, we consider force in that instance to be wrong, with possible exceptions in times when consent cannot be obtained for people certified to be unable to give consent (incapacitated, mentally ill, etc). Even then, though, someone deemed responsible for that patient is asked instead, if available.

Issues about cost, payment and the like are irrelevant from the decision standpoint, and something that the hospital or medical professional can make sure the patient is able to pay, first, before costly treatments. If unable, the hospital, to my knowledge, does not have to provide care outside of ER scenarios.

Re:If a Medical Doctor was involved in the collect (0)

Anonymous Coward | about a year and a half ago | (#42174553)

The problem is the GP misinterpreted what the GGP meant by centralizing decision making away from the people.

You are correct that, with respect to actual care, the patient has the final say (for better or worse, given the fact people act irrationally as the GP noted).

However, the GGP was to the best of my knowledge referring to centralizing the decision making process of healthcare programs. In other words, single-payer government program versus free-market (the merits of that claim have already been addressed in another comment, but suffice it to say I disagree with that sentiment).

Re:If a Medical Doctor was involved in the collect (0)

Anonymous Coward | about a year and a half ago | (#42171981)

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

Does it? Compared to what? Sounds sort of general to me.

Re:If a Medical Doctor was involved in the collect (1)

Archangel Michael (180766) | about a year and a half ago | (#42174117)

"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 Canada and England don't have. Case in point, Walnuts were just classified a "drug" by the FDA because of healthful benefits proven by professional studies, and you can't advertise those benefits unless you're a drug company.

REAL Food is healthy for you and can cure disease, but you can't advertize it. Health Care industry is screwed.

Re:If a Medical Doctor was involved in the collect (0)

Anonymous Coward | about a year and a half ago | (#42174943)

The point is not whether patients should be reading this information to diagnose themselves. The point is that you are forced to supply information, which is then being sold - and they get paid for the privilage to do so.

The point is that these companies are supposed to be providing a tool that helps a docter diagnose/treat a patient, not to collect all the physical information from a person, "anonymise" it, and sell it.

Selling peoples information to other people either without concent or writing in clauses to allow it really is becoming a big problem.

Re:If a Medical Doctor was involved in the collect (1)

CimmerianX (2478270) | about a year and a half ago | (#42169573)

Apparently, she didn't read the EULA.

Re:If a Medical Doctor was involved in the collect (0)

Anonymous Coward | about a year and a half ago | (#42169859)

See http://www.amazon.com/Computer-Systems-Healthcare-Management-ebook/dp/B00AFET8MC for an extensive discussion. On free offer Tuesday, Wednesday and Thursday.

Re:If a Medical Doctor was involved in the collect (1)

sirlark (1676276) | about a year and a half ago | (#42169991)

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!

How I'll screw you with IP (0)

Anonymous Coward | about a year and a half ago | (#42173687)

I'll copy from Lockheed, creators of the F-22. The Air Force bought the data rights for the entire system. Therefore, the cons at Lockheed put all of their data into a proprietary system, and decline to sell rights to the data format or license use of software to translate it to a readable format. I suggested that they sue Lockheed for failing to provide the information, and claim that htey provided gibberish instead, but apparently Lockheed's lawyers beat them to the punch.

Same thing here is most likley. Sure, you can have your records, but its $1.2M for the license for the software to read it.

Re:If a Medical Doctor was involved in the collect (1)

Kittenman (971447) | about a year and a half ago | (#42174563)

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.

Re:If a Medical Doctor was involved in the collect (1)

G3ckoG33k (647276) | about a year and a half ago | (#42176413)

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.

Hello HIPAA! (2)

zifferent (656342) | about a year and a half ago | (#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:Hello HIPAA! (3, Insightful)

taliesinangelus (655700) | about a year and a half ago | (#42169147)

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.

Re:Hello HIPAA! (1)

CanHasDIY (1672858) | about a year and a half ago | (#42169669)

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.

Re:Hello HIPAA! (1)

taliesinangelus (655700) | about a year and a half ago | (#42169865)

I suppose there could be some use for de-identified weapons in research. Not sure what that would be though.

Re:Hello HIPAA! (1)

tnk1 (899206) | about a year and a half ago | (#42172047)

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.

Re:Hello HIPAA! (1)

CanHasDIY (1672858) | about a year and a half ago | (#42172357)

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 when a retailer does essentially the same thing, it's 'no harm, no foul, go ahead and make a quick buck.' WTFIUWT?

Besides, stripping the identifiable stuff doesn't change the fact that A) the data they're selling was generated (i.e., created, invented, produced, or any of a dozen other verbs that imply I should be paid for my work) by me, and B) I'm not getting a dime of it.

Thus is the main bitch I have about all this data-mining bullshit; as my sig indicates, if businesses are going to make money by mining my information, they damn well better be compensating me for it. Otherwise, it's theft, pure and simple.

Re:Hello HIPAA! (1)

tnk1 (899206) | about a year and a half ago | (#42181719)

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 from operating equipment that can make those observations. 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. The fact that other people may get rich off of something incidental to what you are there for (testing) seems like not a good enough reason to force them to pay you for it. You're really not doing anything to earn the money. The fact that you are there in that office is because you want to be there to get tested or checked on for your own health benefit.

Personally, I see it as my price to pay to make sure people continue to take me into account when working on things. If I have some under reported disease, I want people to know that there is one more person out there that has it.

Now, if you are saying that this aggregate data should either be free or not out there at all, then I could see it being free like census data. What I don't see is a realistic way you could get paid for the use of your data, except in some sort of scheme where you are part of a class. No one is going to write you a check for a buck for your test results (if they are worth even that). It's already very expensive to ensure that medical data remains private, no one is going to want to stay in that business if they have to pay everyone even a nominal sum for the data. And I'd argue you're better off giving away the data than you would be in trying to charge for it.

Re:Hello HIPAA! (1)

CanHasDIY (1672858) | about a year and a half ago | (#42183117)

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.

The harm is, not only am I not being paid for it, I'm being charged for the 'privilege' of generating all that money making data for them.

Would you take a job that made you pay to get in, then refused to compensate you for the work you did there, just because they pulled your name off the project paperwork? Because that's basically what Medtronic is doing here.

The fact that other people may get rich off of something incidental to what you are there for (testing) seems like not a good enough reason to force them to pay you for it.

Then there should be an opt-out option. Some of us (me) know better than to do work for free. Any work, passive or active.

Well, besides volunteer work.

FYI, they're also getting rich off selling you the device to begin with. I believe the appropriate idiom for this behavior is "Getting them coming and going."

Now, if you are saying that this aggregate data should either be free or not out there at all, then I could see it being free like census data.

Yea, that's an idea I could get on board with.

What I don't see is a realistic way you could get paid for the use of your data, except in some sort of scheme where you are part of a class.

I take it you're not an accountant? Don't worry, they're very good at figuring out just that sort of thing.

Likely there would be a monthly retainer fee written in to the device contract, based upon profitability of the aggregated data sales, divided by the number of participants. Of course, I myself am not an accountant... I am, however, married to one, so I'll definitely be bringing this topic up over tonight's dinner.

The rancher, ahem, govt/insurance (0)

Anonymous Coward | about a year and a half ago | (#42169057)

Patients will fight for the rights to their own data but their rancher overlords in government or insurance (depending on country) will always have whatever they want.

Third payer necessarily requires a vast legion to have access to your most personal information. Granted, for expensive procedures, there is no way around third payer. It is what it is.

The golden rule: he who has the gold makes the rules. Do you trust your bureaucrats? Do you trust your insurer? You had better, because they'll be first in line for that data you can't have.

Re:The rancher, ahem, govt/insurance (0)

trout007 (975317) | about a year and a half ago | (#42169227)

"Granted, for expensive procedures, there is no way around third payer. It is what it is."

Yes if there way only a way to pay for expensive things like cars and houses without having to save for it.

Re:The rancher, ahem, govt/insurance (0)

Anonymous Coward | about a year and a half ago | (#42169449)

This will eventually grow to overtake us all. Why are things getting so dang expensive anyway? Just because things are expensive doesn't mean we have to abandon all reason and bend over. The market is free to charge us whatever we can bear afterall (although I still believe health care can't work in that model).

So, yes, if you ask anyone inside the industry they'll say it's too cheap and we'll need to exploit X to subsidise it. The rest of us will see an $800, 000 charge for one week in a hospital and wonder what went wrong.

Re:The rancher, ahem, govt/insurance (1)

Anonymous Coward | about a year and a half ago | (#42169661)

The way to pay for expensive things like cars and houses without having to save for it is a loan. This procedure requires going to a bank and applying. If you qualify, you put up collateral (usually the car or house you're buying), and in exchange get the money.

The problem with healthcare is that there's no inherent collateral. It's not like they're going to repossess your new kidney when you can't pay for it. It's also unlikely that a typical person would qualify for a loan for a kidney transplant even if they did have collateral.

dom

Re:The rancher, ahem, govt/insurance (0)

Anonymous Coward | about a year and a half ago | (#42170137)

Why not? Making a loan is always a risk. The question is, will it be repaid? In fact, that sounds better than death panels to me. You don't get that operation unless there is a good chance it will allow you to live long enough to pay for it. Way it is now, we spend millions to keep dying people alive in a hospital bed.

Kidney transplant payment (0)

Anonymous Coward | about a year and a half ago | (#42171961)

As long as the government is paying for dialysis, it should pay for transplants and the medicine regime to preserve the transplant. Kidney transplants have a financial breakeven of 4-5 years currently. (dialysis vs transplant + drugs) If you expand transplants, maybe not so much, you'd be dipping into a less healthy pool of patients with more complicating factors, who would have poorer survival rates (not getting to the breakeven point). But the US is ahead of most countries in per captia kidney transplants because of a better rate of living donors.

And, btw, its not the kidney that costs money, it's all the expertise and care in the surgery and subsequent nursing.

FYI, Medicare pays for the bulk of kidney dialysis, and dialysis represents about 3% of Medicare's budget iirc.

Say what? (3, Insightful)

Errol backfiring (1280012) | about a year and a half ago | (#42169115)

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:Say what? (0)

Anonymous Coward | about a year and a half ago | (#42169773)

HIPAA, dipshit.

Easy answer (4, Funny)

Applekid (993327) | about a year and a half ago | (#42169275)

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

Re:Easy answer (1)

Hillgiant (916436) | about a year and a half ago | (#42170793)

I interpreted it as: "not you". Or perhaps a more verbose: "If you have to ask, you cannot afford it."

Re:Easy answer (1)

Omegium (576650) | about a year and a half ago | (#42173991)

That would be Doctor No

Market Opportunity (2)

ohnocitizen (1951674) | about a year and a half ago | (#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."

Re:Market Opportunity (0)

Anonymous Coward | about a year and a half ago | (#42169451)

You'd be marketing to the wrong 'consumers'. The people who care about (read: willing to pay for) the data aren't ones people generating it. Marketing to people who don't buy your products seems rather unproductive outside of a PR campaign to improve one's image.

Re:Market Opportunity (0)

Anonymous Coward | about a year and a half ago | (#42169585)

The investors/shareholders in MedicalCompany have taken issue with your failure to monetize data and are now going to sue.

Re:Market Opportunity (1)

CanHasDIY (1672858) | about a year and a half ago | (#42169963)

The investors/shareholders in MedicalCompany have taken issue with your failure to monetize data and are now going to sue.

Says Morbo:

Investments do not work that way! GOODNIGHT!

Re:Market Opportunity (1)

Fnord666 (889225) | about a year and a half ago | (#42170159)

"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. Good luck with that.

What rights? (4, Informative)

anorlunda (311253) | about a year and a half ago | (#42169359)

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.

Re:What rights? (2)

koan (80826) | about a year and a half ago | (#42169569)

"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.

Re:What rights? (1)

geek (5680) | about a year and a half ago | (#42169861)

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? (3, Informative)

Chris Mattern (191822) | about a year and a half ago | (#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).

 

Re:What rights? (1)

CanHasDIY (1672858) | about a year and a half ago | (#42169987)

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.

Re:What rights? (1)

TheSpoom (715771) | about a year and a half ago | (#42170579)

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.

It's HIPAA (1)

Anonymous Coward | about a year and a half ago | (#42171403)

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

No Health Care, the new health care (0)

Anonymous Coward | about a year and a half ago | (#42169523)

So we can't eliminate being tracked on the web.
We can't eliminate tracking from smart meters
We can't eliminate tracking from water meters
We can't eliminate tracking from doctors.
We can't eliminate tracking from drones.

Just who the fuck is left upholding their oath?
This isn't America, it's a fucking corporation.

Re:No Health Care, the new health care (2)

LVSlushdat (854194) | about a year and a half ago | (#42169699)

So we can't eliminate being tracked on the web.
We can't eliminate tracking from smart meters
We can't eliminate tracking from water meters
We can't eliminate tracking from doctors.
We can't eliminate tracking from drones.

Just who the fuck is left upholding their oath?
This isn't America, it's a fucking corporation.

I gotta ask the obvious question here... Did you JUST figure THAT out???? A LOT of us have known this for a few years now... I often wish I could forget how America is now owned, lock-stock-and-barrel by corporations...

Re:No Health Care, the new health care (0)

Anonymous Coward | about a year and a half ago | (#42172121)

example,

"There is no America. There is no democracy. There is only IBM, and ITT, and AT&T, and DuPont, Dow, Union Carbide, and Exxon. Those are the nations of the world today."

(Network, 1976).

Understand? (3, Insightful)

koan (80826) | about a year and a half ago | (#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?

Re:Understand? (1)

greg1104 (461138) | about a year and a half ago | (#42169685)

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.

Re:Understand? (0)

Anonymous Coward | about a year and a half ago | (#42172201)

The data was derived from me, I am the data, therefore it is mine, it's like a doctor taking a blood pressure test then refusing to tell me the results until I pay him... "IT'S MY FUCKING DATA" the cost of extracting said data should not be my problem as the "health" industry resales it, so why can't I have what I am?

Easy answer is "greed".

It is something people like you have come to expect and think of as "normal", corporations taking and selling what they please and leaving you in the cold, weird that this makes sense to you, strange that you would be OK with it, equally odd that you put a corporation over your own interest.

You are probably OK with corporations patenting human DNA, along with Monsanto's disastrous genmod business, what a horrible World you are helping too create.

Re:Understand? (3, Interesting)

greg1104 (461138) | about a year and a half ago | (#42172373)

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.

fuck a biTch (-1, Troll)

Anonymous Coward | about a year and a half ago | (#42169791)

politic?s ope8ly.

Who Owns Your Health Data? (1)

homey of my owney (975234) | about a year and a half ago | (#42169847)

I do. I'd like to hear any argument suggesting that it is not mine.

Re:Who Owns Your Health Data? (4, Interesting)

taliesinangelus (655700) | about a year and a half ago | (#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.

Health Data is owned by the Patient (2)

prefec2 (875483) | about a year and a half ago | (#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:Health Data is owned by the Patient (3, Informative)

BetaDays (2355424) | about a year and a half ago | (#42170207)

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 issues. I'm even paying them to keep my records safe by going to them all the time , being my primary care physician. As long as I am a customer of theirs they are happy with keeping my records on file and "lending" out as needed to doctors they refer me to but as soon as I said I was changing doctors (I moved and wanted a closer doctor then the 1.5 hour drive it would now take to get to my old one) they got all up in my face over my records.saying they owned them. After 3 months I finally got my records which really pushed me back 3 months on any medical diagnoses and treatments since the new doctor didn't want to start or stop anything the old doctor told me to do since he didn't have any facts of what my history was at the time. So now any tests I have done I make sure I get a copy for my own records and keep them in my safe at home.

Let the free market sort it out (1, Funny)

Overzeetop (214511) | about a year and a half ago | (#42169947)

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 business.

Why do you Democrats who want regulations about these kinds of things hate America so much?

[/sarcasm]

Re:Let the free market sort it out (0)

Anonymous Coward | about a year and a half ago | (#42178689)

Hello Overzeetop!

How is your kidney condition healing? We have many wonderful and cheap products to help your recovery. We can also address your incontinence and flatulence for bargain prices. If you'd like to hear, we can tell you when you're getting stomach cancer. Please notice in case you're not interested in this data we'll also be making this offer to your new girlfriend. New offers daily!

Contact now and you'll get a free toilet seat cover in addition to your purchase!

Have a healthy day and visit a InfoHealth INC retail shop today!

http://www.heathspamgimmix.com/infohealth [heathspamgimmix.com]

What the hell is this doing phoning home? (1)

Hizonner (38491) | about a year and a half ago | (#42170523)

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.

Re:What the hell is this doing phoning home? (0)

Anonymous Coward | about a year and a half ago | (#42173825)

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.

These devices don't ship anything sensitive into "the cloud." They do exchange (bi-directional!) sensitive data over a point-to-point connection to a remote server sited at the device manufacturer.

Do you know why these devices do that? TO REDUCE COST OF DELIVERING MEDICAL SERVICE. Where older devices required you to take off from work to go to your doctor and spend an hour or so at the hospital or heart specialist's office every other month or so, these new devices let you just dial-in to check whether its still working OK and even get slight tuning adjustments made ... all without being billed any of that super-expensive heart specialist's time.

Frankly it's a great approach sabotaged in the example story by a doctor who seems peeved that their lucrative in-office billing opportunity was bypassed and so refused to inform the patient when the remote status reading showed that her device was malfunctioning. Get mad at the greedy doctor, not the device manufacturer for that.

Re:What the hell is this doing phoning home? (2)

Hizonner (38491) | about a year and a half ago | (#42173995)

a remote server sited at the device manufacturer.

What, exactly, do you think "the cloud" is? Hint: what you describe is the essence of the cloud.

How do the data get from the device to the cloud? Why, via a local reader. Essentially the same hardware could give the patient the data without involving the manufacturer, which would be a much more secure and robust design as well as keeping control where it belongs. Whether or not you involve the doctor is a separate decision... but it's a lot easier not to involve the doctor if you don't have to deal with going through the manufacturer and then authenticating who's asking.

And TFA is talking about the fact that patients can't just "dial in and bypass their doctors". They're told nothing at all unless they go through the doctor. In fact, one of the people in the article had a critical malfunction, which I'm sure the device knew about, and wasn't even told that. And that is caused by this design. If the patient's local reader were under local control, then it wouldn't even be possible.

Re:What the hell is this doing phoning home? (0)

Anonymous Coward | about a year and a half ago | (#42175601)

a remote server sited at the device manufacturer.

What, exactly, do you think "the cloud" is? Hint: what you describe is the essence of the cloud.

I think that "the cloud" is computing resources delivered as a service over a network http://en.wikipedia.org/wiki/Cloud_computing [wikipedia.org] . Two computers on a dedicated connection is the antithesis of the cloud.

God I hope no one lets you do system architecture.

Re:What the hell is this doing phoning home? (0)

Anonymous Coward | about a year and a half ago | (#42175721)

via a local reader. Essentially the same hardware could give the patient the data without involving the manufacturer

You don't actually know anybody with a pacemaker or internal defribrilator, do you? The transtelephonic monitor is a modem to convert signals to audio and NOT a local reader. http://www.liheart.org/services/transtelephonic-monitoring/ [liheart.org]

Sadly, I don't think it is me... (1)

realsilly (186931) | about a year and a half ago | (#42170581)

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 is important for my doctor to have some sort of running history, then I agree that my doctor (or his practice) may retain a copy for the life of my partnership with him. Should I leave that partnership, then after x years, my doctor must destroy his copy of my medical information.

I should never hear that my doctor had his notes transcribed by anyone other then one of his physically present staff.

Other than that, I should be the only one to own my medical (health) data. No if, ands, or buts about it. I paid for the diagnosis.

Re:Sadly, I don't think it is me... (0)

Anonymous Coward | about a year and a half ago | (#42170903)

Under Obamacare rules you do not own your medical data. The HHS does and will collect it (section 153.340). They are also legally able to 'share' it with a boatload of governmental agencies without your consent. Anything you say to a medical professional, recorded into your brand new EHR, is given to the government. That information is not yours and is not private.

Medical Record here (1)

Dishwasha (125561) | about a year and a half ago | (#42170605)

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.

For-profit medicine (0)

Anonymous Coward | about a year and a half ago | (#42171111)

Doctors and hospitals have been waging war on the patients ever since Nixon helped to create HMOs. Only the very rich can afford real doctors. What us chattel are left with is a bunch of incompetent thieves. They will sell your records, and any other thing they can to make money off of you, and you will like it.

I pay for it, I own it. Don't I? (1)

Anonymous Coward | about a year and a half ago | (#42171463)

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?

About as stupid as profittizing medical care... what do we think will happen? Lowest possible service for maximum possible profit. Works great in many areas, however medical care isn't one of them.

Just a bull shit way to. (0)

Anonymous Coward | about a year and a half ago | (#42171527)

Steal more money. Ripping people off is all big business is about that is why the money is all at the top only so many greedy douche bags with a degree instead of prison to go around.

The question is nonsensical. (1)

John Hasler (414242) | about a year and a half ago | (#42171537)

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

Patient data belongs to the patient (0)

Anonymous Coward | about a year and a half ago | (#42175321)

Again the greedy medical device companies are trying to illegally profit from personal information. If they are "forbidden" from giving that data to the patient, then they MUST be forbidden from selling it, period. I would advocate removing all wireless data acquisition devices in the home and telling the device manufacturer that under HIPAA they are FORBIDDEN BY LAW of ever seeing that information. If it's needed for proper maintenance/diagnosis then the data can be downloaded at the hospital under a doctor's direction.

All I know is I sure don't. (1)

TheSkepticalOptimist (898384) | about a year and a half ago | (#42178853)

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.

If you control the data you "own" it. (0)

Anonymous Coward | about a year and a half ago | (#42188489)

Health data flies around. Medical records are used by universities for studies, governments for tracking and studies, insurance companies, drug companies, hospitals and associated institutions and clinics and all of these subcontract out various functions that leak the records all over the place.
And if it is sold by a low paid h1-b or kid just out of school as a temp contractor paid $15/hour it is always impossible to get any damages. Who's got the money to sue the gov or a big drug company when your data is sold, how would you even find out where it was sold from? Especially if you are sick.

There is no privacy.

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