Patient Just Wants To See Data From His Implanted Medical Device

An anonymous reader writes "Hugo Campos got an implanted cardiac defibrillator shortly after collapsing on a BART train platform. He wants access to the data wirelessly collected by the computer implanted in his body, but the manufacturer says No. It seems weird that a patient can't get access to data about his own heart. Hugo and several medical device engineers are responding to live Q/A on Sunday night on such topics via ACM MedCOMM webcast at ACM SIGCOMM."

Since the editors are too lazy to do their job

[OverlordQ]

Here's a link [blogspot.com] to the actual post.

This is illegal under HIPAA.

[Immostlyharmless]

Any entity that collects medical data on you MUST provide a way to get you copies of that information. If he really wants the data that badly, I'd contact a lawyer and pursue it from the HIPAA angle. Chances are very good there's probably not a hell of a lot of information in it. If he's really worried about it, he should contact his cardiologist and have them order an interrogation the pacer. Pretty simple stuff really and that way its covered under insurance..(probably unless there's no medical reason to do so). They probably aren't going to come out and interrogate it in the home, because they fiddle with the settings to make sure its working right and for that reason it needs to be done only in a setting where he's on telemetry and has medical staff standing by.

Re:Since the editors are too lazy to do their job

[Anonymous Coward]

I was close to posting pretty much the same thing, but actually there are many entries on the subject of patient access to ICD data. (Apparently this is a big issue for the ICD owner community.)

In addition to link OQ posted, there's:
http://icdusergroup.blogspot.com/2012/01/top-five-excuses-icd-manufacturers-give.html [blogspot.com]
http://icdusergroup.blogspot.com/2012/01/i-will-get-back-to-you.html [blogspot.com]
http://icdusergroup.blogspot.com/2012/01/fighting-for-right-to-access-my-hearts.html [blogspot.com]
http://icdusergroup.blogspot.com/2011/12/karen-sandler-cyber-lawyer-running-on.html [blogspot.com]
http://icdusergroup.blogspot.com/2011/07/it-isnt-nice-i-want-my-data.html [blogspot.com]

This is a personal first, but I'm actually going to defend the editors on this one. I think linking to the blog, rather than any single post, was appropriate.

/posting A/C because I work for one of the ICD manufacturers mentioned in the blog

//SW Dev but I don't work on devices

///dammit I had things to do thing weekend that won't get done. I have a feeling I'm going to spend a lot of time catching up on this blog.

Re:Unsurprising

[ceoyoyo]

You cannot patent someone's stem cells or genes. That's a pop journalism myth. You CAN patent treatments, given to other people, based on those stem cells or genes. It's okay though, if you have kids you won't be guilty of patent or copyright infringement.

Re:Is it worth it?

[tomhath]

The less data/information they give to personal injury lawyers the safer they are. Even if there's nothing wrong with the device a jury could be convinced that something was wrong with pretty graphs that show...something.

Re:Unsurprising

[ceoyoyo]

That case was about the opposite - a patient wanting to control (or profit from) the use of the descendants of her cells, not a company claiming rights over a cell line.

Re:Blame American Jurors

[91degrees]

These things tend not to be quite so frivolous when you look into them.

Straight Dope Boards [straightdope.com] suggests that there was a design issue that the gas can manufacturer knew about, that would result in an explosion. A slight redesign would have meant that the 4 year old would have survived.

Re:Is it worth it?

[fredprado]

They have to give them to you here in my country (Brazil), here your doctor can only see your tests through you. He asks for the exams, you go to the lab, they collect your samples, and when the results are ready you go there and get them (or get them through the internet) and bring them to the doctor, if you so wish. If you prefer you can just get the results and bring them to another doctor and never go back to the former one, who requested the tests, or you can bring them to both.

I don't know specifics about how the procedures are in US, but I do know that under HIPAA they must give you any results you request They can't legally refuse to do so.

Re:Is it worth it?

[ceoyoyo]

"should be owned instead of being responsible for their own well being"

If someone is going to be responsible for his well being, he should be given the best possible information, not the raw, context free dump some engineering company e-mails him.

If you ever find a doctor who's willing to treat a close relative (or himself) for something serious, find another doctor. Most won't do it, and none of the good ones will. EVERYBODY's judgement is clouded when they're considering things seriously affecting their own health.

Yes, the ultimate responsibility lies with the patient. This guy should have access to his data (which he does), by asking the correct person for it.

My mechanic always explains what's wrong with my car when a decision needs to be made, and what was done when I pick it up. Is he being paternalistic, or giving me good service?

Re:Is it worth it?

[amoeba1911]

The tech who gives you an x-ray, CT or MRI scan won't give you the images either. You can request them from your doctor, and he will (or may have to) give them to you, but he'll probably want to sit down and go through them with you first.

Hey, that's false! My wife got an MRI recently, and I asked the technician to give us a copy of the data. There was no objection or hesitation, the technician simply burned a CD and handed it to us on our way out. I learned that their images are stored in a proprietary format, but conveniently the CD came with the software necessary to view the images.

Re:Is it worth it?

[Kalriath]

Do you really though? If you ask your hospital for a copy of your record, do they give it to you or do they redact it first?

I work for a hospital, and I can answer that: they redact the shit out of it. And they're so fired up about making sure they can redact the information that I would be fired if I ever opened my own medical record. The best part is that they claim in the pretty pamphlet they give new hires that medical records are copyrighted property of the hospital board.

Re:Is it worth it?

[UncleTogie]

Did you just call DICOM proprietary?

Technically correct. It *is* a copyrighted standard, with the copyright being held by the National Electrical Manufacturers Association. When defining proprietary software as "computer software licensed under exclusive legal right of the copyright holder", this standard would fall into that category.