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Patient Just Wants To See Data From His Implanted Medical Device 262

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."
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Patient Just Wants To See Data From His Implanted Medical Device

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  • Just go to Defcon (Score:1, Interesting)

    by Anonymous Coward on Saturday August 11, 2012 @02:41PM (#40959025)

    Someone will have the data in a matter of minutes, and you might even live long enough to see it yourself.

  • by crashumbc ( 1221174 ) on Saturday August 11, 2012 @02:50PM (#40959099)

    Not knowing his specific one I can't say for sure. But I can say MOST medical devices have very little in the way of security... its really pitiful how far back the medical field is.

  • by davidwr ( 791652 ) on Saturday August 11, 2012 @02:57PM (#40959145) Homepage Journal

    There are legitimate medical reasons why some patients shouldn't have access to all raw medical data.

    This is particularly true in psychiatric medicine, where past therapists are required to pass on notes to future therapists, but patients don't necessarily have the right to read the notes themselves.

    Now, if the company is refusing to share the raw data with the patient's doctor, that's just plain wrong and it should be illegal. Likewise, if they are refusing to share it with the patient's attorney, then the attorney should have an absolute right to subpoena it.

    Likewise, if the doctor doesn't have a bona fide medical reason for refusing to pass that data on to the patient, that should be called medical malpractice.

  • by flogger ( 524072 ) <non@nonegiven> on Saturday August 11, 2012 @05:10PM (#40959997) Journal
    I usually avoid hospitals and the medical profession in general unless it is needed, ie, broken bones or donating a kidney (Which I did recently.) A couple years ago while camping my some broke a bone. I put it in a splint then took him to the hospital to get a get it set and placed in a cast. This was on a Saturday in a very "out-in-the-boonies" location. Before the staff would even look at my son, I had to sign a patient's "Bill of Rights." indicating that I had read the items on their list... There were around a dozen items and I don't remember what they were except for the first one. "The Patient has a Right to all medical records assembled during the visit." Maybe this is enforced in other hospitals. I don;t know.

    Anyway, My son was X-Rayed and dealt with and released.

    On the way out, I asked the secretary, who made me sign the "Patient's Bill of Rights," for a copy of my sons X-Rays and a print out of the Vitals they recorded. I was told "No, Those are not for you." I put on my "Contrary-Old-Bastard Hat" and stated that I have a "right" to those and read back the 1st item on theh "Patient's Bill of Rights." I explained that the X-Ray and vitals were records of the visit and that the hospital, before my son was allowed any medical attention, made me sign a form to acknowledge that I have a right to those records. I was told that I had to go through the Records department and Billing in order to get the records. These offices would not be open until the following Tuesday (due to a Holiday.) Not wanting to get mad at the secretary for doing her job, I asked to talk to her boss or whoever was in charge of the hospital that day. She informed to me with all of her arrogance that since it was the weekend, she was in charge. So I ranted to her for a while and then read the entire "Patient's Bill of Rights" to her. I strongly emphasized that nowhere in this document, which we both signed, did is mention that I should go through Billing and records. After ranting a bit more she let me know that my son's doctor can request the records and the records will be sent without charge. I explained more how I am his parent/Guardian and in charge of his primary care and that I want the records to that I can hand deliver the records when I can return and set an appointment for cast removal. Again I read the entire "Patient's Bill of Rights" to her and then explained that nowhere on it did it say that my doctor was to get the records. I asked her bluntly to obtain a copy of the records. She actually stomped her foot and said, "No."

    "OK," I said, "since I have been forced to acknowledge that I have a right to my son's records, I am going to sit right here in the middle of this hallway until I get them." And I did; I sat down in the middle of the hallway. (My son was looking at me in a state of shock -- He was at that Jr. High age when anything a parent does is considered embarrassing .)

    The secretary stared at me for about 30 seconds. then left. A minute after that she came out with a doctor and he asked what was up. I mentioned that I was waiting for a copy of my son's medical records. He nodded, went behind the counter and gave me the X-Rays and vitals papers. I said "Thank you" and left.

    This anecdote is not so that I can say I am an old cantankerous fart, it it to illustrate that even though people have rights to information, the ones that hold the information feel compelled not to give it up. THis is true with software, medical data, music... I don;t know where this attitude comes from.

    [off my soapbox]
  • Re:Is it worth it? (Score:5, Interesting)

    by sumdumass ( 711423 ) on Saturday August 11, 2012 @06:12PM (#40960313) Journal

    First, the FDA isn't some magic group that never gets anything wrong. They have approved devices, drugs and treatments that later was found to have significant life threatening problem. They are supposed to test and weed those problems out or even approve of the dangers as acceptable and manageable considering the goals of the device, drug or treatment. The FDA simply is not a magical group of people who never allow something potentially harmful outside of it's labs. It's design was traditionally to validate claims and ascertain harmful effects so we didn't have electrified dildos out there still treating female hysteria and hair loss or leaching to treat pneumonia.

    Second, knowing the output can isolate the input not used to initiate the output. It can also be used to determine or differentiate the control signals verses the information. Also, if you are used to cracking wifi encryption, assuming these things use some sort of encryption, knowing what most of the signal will say- even just portions of it- goes a long way at finding the key to cracking the encryption and the signal altogether.

    As for access to the output, I don't have a problem with it. I actually think it should be a right of the patient. I know the doctor gets access to the readout and makes changes to the devices based on it. Perhaps they don't want the patent influencing those changes by discussing them with the doctor? There are a load of reasons ranging from the paranoid to the idiotic and from the quality of operation to hiding the workings from competitors.

  • Re:Is it worth it? (Score:4, Interesting)

    by jc42 ( 318812 ) on Saturday August 11, 2012 @06:28PM (#40960415) Homepage Journal

    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.

    Actually, the way it typically works in the US is: The company can make the judgement that you don't have the funds (or the time ;-) for a successful court challenge, which will take a decade for all the appeals and more money than you'd believe. In the meantime, they can continue to refuse to give you their medical info, without any further legal repercussions than your lawsuit, which they will delay with every legal trick available. If you actually do have the funds (and live long enough), yes, you can get them to obey the law -- and give you their data from a decade earlier. Meanwhile, they've upgraded your implants, and the court didn't order them to give you the data from your current model(s), so they don't.


  • by guises ( 2423402 ) on Saturday August 11, 2012 @06:49PM (#40960531)
    Obviously I don't know what he actually said here, there are polite ways to ask for things and impolite ways, but I've been on the receiving end of this "We won't give you your own information" bullshit before. In my case, the lady behind the counter claimed that there was some law preventing her from giving the information to me. I didn't have a piece of paper stating exactly the opposite, so I ultimately just had to leave without getting the test that I had come for.

    It doesn't sound to me like he was being a dick. Maybe a lawsuit would have been more appropriate than sitting in the hallway, but this is a significant problem and I'm glad he stuck to his guns.
  • Re:Is it worth it? (Score:4, Interesting)

    by Opportunist ( 166417 ) on Saturday August 11, 2012 @07:10PM (#40960639)

    If you produce data from my body, I think it's only fair that I get access to it. I want to know what data a company collects about me, especially if it's as personal as data from one of my vital organs.

    If I don't understand the data, I can go to a doctor and have him translate it. If the software is proprietary, I'll go to you and have you extract the data, then you may give me the data. I trust that you didn't copyright numbers and letters?

  • by Anonymous Coward on Saturday August 11, 2012 @10:19PM (#40961457)

    +1. There is a fine line between being polite and being a coward and the difference in people's opinions on this matter generally stems from how much they value contracts in general. If you are the kind of person who simply never reads what they sign and just accepts any perceived future unfairness (most people) then you're a lazy coward in my book who only has rights because of the "dicks" of this world. If you don't read what you sign but later resolve to fight perceived unfairness (by refusing to pay a termination fee for a phone contract for example) or you often/always read what you sign and frequently refuse to sign things until certain conditions are changed then you are a complete dick and the lazy, cowardly fucks of this world are indebted to you for making their lives easier.

    TL;DR. When dealing with any organisation, company, or government, being a dick is a true virtue and being polite is selfish.

  • Re:Is it worth it? (Score:5, Interesting)

    by Jafafa Hots ( 580169 ) on Sunday August 12, 2012 @04:05AM (#40962817) Homepage Journal

    The tech who gives you an x-ray, CT or MRI scan won't give you the images either.

    Nor really true anymore, but not for the reason you'd expect.
    So many hospitals send you to private locations for imaging these days that you often ARE given your MRI and CT scan results simply because you're expected to cart them to your Dr. yourself. Saves them a buck.

    Also, many hospitals no longer put casts on broken limbs, they simply diagnose & xray and send you with the xrays to an orthopedist.

    I scanned the xrays of my broken ankle and put them on Flickr.

    When I got a CT scan of my head, I used images of my brain as my Facebook profile photo.

    When I got an MRI they handed me the data disc to take to the Dr. I made a copy, figured out the strange image format and will post those to flickr some day when I'm bored.

    Meanwhile when I got to the Dr. with the original disc, I ended up having to show HIM how to use the included app and view the images.

No problem is so large it can't be fit in somewhere.