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Who Owns Your Health Data?
porsche911 writes "The Wall Street Journal has an interesting article about how the data from Implanted health devices is managed and the limitations patients run into when they want to see the data. Companies like Medtronic plan to sell the data but won't provide it to the person who generated it. From the article: 'The U.S. has strict privacy laws guaranteeing people access to traditional health files. But implants and other new technologies—including smartphone apps and over-the-counter monitors—are testing the very definition of medical records.'"
it's a medical record, entitled to the appropriate legal protections and the property of the person to whom it refers.
End of discussion.
Sphinx of black quartz, judge my vow.
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.
cat sig >
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.
Yup. Why would it be any different than the printout of an ECG or an image from an MRI? Just because it's inside the body doesn't make it something other than a medical device.
The world's burning. Moped Jesus spotted on I50. Details at 11.
I'm more concerned about a third-party selling my data. All medical information should only be between the doctor and the patient. Any intermediaries should have limits that prevent them from sharing the data with anyone other than the patient or the doctor (who is really acting on behalf of the patient). If there is a loophole that allows companies like Medtronic to sell patient data then congress should address this (I can't even type this with a straight face).
I'd thought these limitations are already in place and data from medical devices would be covered like data from labs and radiologists.
These comments are my own and do not necessarily reflect the views or opinions of my employer or colleagues...
Citation...?
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?
Nae king! Nae laird! Nae yurrupiean pressedent! We willna be fooled again!
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.
According to Betteridge's law of headlines, the answer to "Who Owns Your Health Data?" is "no".
More Twoson than Cupertino
Ok, lets change Doctor to Medical Professional.
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."
HIPPA only applies to health care providers. Anyone else who gets your data by any means, is not restricted by HIPPA. Notable examples are life insurance companies. You sign a waiver to give them access to your health info to qualify for a policy. After that they can do whatever they want with the data. They can, and do, routinely pass it along to a medical information clearing house in Massachusetts (I forget the name of it), which is a third party. The clearing house dishes out the information (including personal identifying information) to anyone who wants to pay for it.
Americans imagine that they own their personal data. Data (information, facts) are not property and can not be owned. Intellectual property laws bestow some rights but not "ownership" You can own the rights but not the facts. If you could own facts, then you could prevent police and courts from using facts about your behavior against you.
Records, on the other hand are ordinary property. Whoever owns the records can treat them like any other property, regardless of the information they contain (exceptions for national security, for parties covered by HIPPA, records under subpoena and so on). There was once a notable case of a hospital in Las Vegas. They rented a warehouse to store paper patient records. They failed to pay the rent. The landlord sold all property stored in the warehouse to recover money owed to him. Neither the landlord, nor any subsequent owner of those paper records was restricted in any way as to what they could do with them.
I 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).
These comments are my own and do not necessarily reflect the views or opinions of my employer or colleagues...
End of discussion.
You have no appreciation for what will happen when this becomes a political issue.
This post comes with a double-your-money-back guarantee!
Any offense taken to this post is at your sole discretion.
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.
Agent K: A *person* is smart. People are dumb, stupid, panicky animals, and you know it.
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.
"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?
"If any question why we died, Tell them because our fathers lied."
Apparently, she didn't read the EULA.
I wouldn't want my data sold to anyone...ever...period!
However as real-time monitoring devices become more prevalent, more precise, and more capable; I can see a strong argument made for the data being captured and analyzed in aggregate by "trusted sources". The CDC could get an early warning of an outbreak, or it could be found that a disproportionally large number of people in a small town are getting cancer due to poor working conditions in a factory or pollution.
As with any data collection tool, it has as much potential to harm as it does to help...but so does a hammer.
I'm sorry, but your opinion seems to be wrong.
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.
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.
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.
I do. I'd like to hear any argument suggesting that it is not mine.
See http://www.amazon.com/Computer-Systems-Healthcare-Management-ebook/dp/B00AFET8MC for an extensive discussion. On free offer Tuesday, Wednesday and Thursday.
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.
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.
Faster! Faster! Faster would be better!
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]
Is it just my observation, or are there way too many stupid people in the world?
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:
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?
These comments are my own and do not necessarily reflect the views or opinions of my employer or colleagues...
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!
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.
These comments are my own and do not necessarily reflect the views or opinions of my employer or colleagues...
As the content creator (via the artistic channel of a medical implant) shouldn't this be protected under copyright?
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.
I am officially gone from
It's a classic example of how IP law works now. In this case "on a computer" is replaced with "in a body".
The world's burning. Moped Jesus spotted on I50. Details at 11.
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.
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?
Sphinx of black quartz, judge my vow.
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.
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.
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.
Life takes interesting turns, but the most interest is when you're off the beaten path.
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.
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.
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.
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.
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
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.
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.
No one owns data. What you mean to ask is "Who should have access to your health data?"
Warning: this article may contain humor, sarcasm, parody, and perhaps even irony. Read at your own risk.
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.
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.
Agent K: A *person* is smart. People are dumb, stupid, panicky animals, and you know it.
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.
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.
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
Who would have thought that "tissue banks" do NOT have to comply with HIPAA?
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.
"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.
Agent K: A *person* is smart. People are dumb, stupid, panicky animals, and you know it.
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).
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.
"The greatest lesson in life is to know that even fools are right sometimes" - Winston Churchill
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.
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.
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.
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/
Journey onward.
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.
I haven't thought of anything clever to put here, but then again most of you haven't either.
Again, I've never seen a nursing home which didn't have at least a consulting physician.
Sphinx of black quartz, judge my vow.
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.