Who Owns Data From Inside Your Body?

Friday, January 20, 2012

Transcript

If you have an implanted medical device that can collect data in your body, who owns that information?  There doesn't appear to be a clear answer to the question.  Brooke speaks to Hugo Campos, a patient advocate and founder of the ICD User Group, about his unsuccessful attempt to obtain the data collected by his own implanted defibrillator.

Comments [10]

George Samaras from Pueblo CO

I believe the argument "the information is too technical" is specious! Not all patients are mere high school graduates that require the FDA-recommended <8th grade reading level. Some are actually more knowledgeable than their physicians – let’s not forget who teaches medical school students and who develops medical devices. I believe that the correct response is “the data is messy, because we were only thinking of it being used by a small group of specialists” and “we will need to develop a user-friendly app to present the data in an intelligible format”. Hiding behind “learned professional” really does not pass muster anymore in this day and age.
GM Samaras Pueblo CO

Feb. 03 2012 11:54 AM
Sequoia from MA, USA

"The entirety of the data is sometimes too technical for even some physicians to understand and not relevant to patients."

@David Lee Scher: I beg your pardon but whether or not the raw data are too technical is something for the *patient* to decide. "Can I have the raw data?" "It's far too technical, you couldn't make heads or tails of it- you may even misinterpret it." "Thank you for the warning but I still wish to have them." At this point I don't think it's reasonable to argue for withholding the information from the patient, and Mr. Campos has clearly gotten to this point. It very much reinforces the stereotype of the tone-deaf, condescending physician to hear you insist that the data are "too technical" for the patient. Have you seen these data, or is this assertion just a hunch? (I apologize if you have in fact seen the data).

Informed consent: inform the patient then let him/her make his or her own choice. Why should this be different?

Jan. 30 2012 05:09 PM

Thanks you OTM for addressing this. Patient Data should be free both to the patient and de-identified for scientific research. There is a huge movement which Hugo, myself and many others are part of. Search on ePatietDave, Fred Trotter, or the artist Regina Holliday to learn about patient empowerment. Releasing your own data, whether it be from a pacemaker or just your lab tests, should not be a governmental issue, yet it is illegal in a great number of states.

Jan. 24 2012 04:26 PM
John S. Erickson, Ph.D. from Norwich, Vermont, USA

An issue not explored in this story was what medical device manufacturers are likely to do if (and when!) patients' data becomes unlocked. If history is any guide, device makers will most likely block physicians from releasing data to patients on intellectual property grounds; they'll do this by putting doctors under non-disclosure agreements. And if hackers release code and technology for unleashing this data, devices makers will go after the hosting sites, probably on the basis that they somehow violate patents.

Hopefully none of the above will happen; my point is that the interviewer wasn't sufficiently cynical regarding how device makers will react.

Jan. 22 2012 06:51 PM
David Lee Scher, MD

This type of data is able to be provided by the physician. If a provider refuses to give it, then I would advocate going to one who understands that a more informed patient is a better patient. The problem with this type of data is that it is very technical. I make an argument for the device company to provide patients with portals which contain summaries that are easily understandable with explanations of pertinent data. The entirety of the data is sometimes too technical for even some physicians to understand and not relevant to patients. But there is definitely data which patients should have. I think a panel of patients with physicians of professional organizations (heart rhythm society) should work together on this. I applaud Hugo for his efforts.

Jan. 22 2012 05:34 PM
Francis Whitby from Salt Lake City, UT

The story was excellent, but Brooke failed as an interviewer. I like the idea of Mr. Campos getting all of his raw medical data. More power to the consumer. However, Brooke failed to address the obvious question; why, if Mr. Campos is dissatisfied with the service that he gets from his medical provider, does he not refuse to use the logging device? By his own admission, he seems pretty good at self-evaluation and administration of health care. He can forego treatment and insure that someone else is not hoarding his health data. The health provider is not forcing him to have this implanted device and in the end, Mr. Campos chose to purchase it. I love Brooke, but this should have been part of the interview and she failed to go there.

Jan. 22 2012 04:15 PM
Francisco from Newcastle upon Tyne, UK

@Jay,

I think the Toyota example is a bad one because the equivalent data from Toyota would be the log of fuel flow, spark firings, etc from the engine management computer (which is arguably confidential as Toyota designed the engine).

However, I agree that people should have access to the data inside their bodies -- after all our bodies weren't designed by companies!

Jan. 22 2012 02:56 AM
Jay from Montreal

This data is part of his medical record, he has a right to it. Isn't that obvious.

In what other industry would this be accessible? Would Toyota prevent me from seeing the trip odometer in my car?

Jan. 21 2012 07:53 PM
Mary Kolk

Absurd that we even need to talk about this issue. After looking at the Republican candidates for President of the United States of America, it helped me to understand the absurdity of main stream thinking. We can not believe that this man, Mr. Campos does not have the right to his own medical records. Main stream thinking - we always did it this way - we must continue to do it this way. Mr. Campos, I admire your tenacity and drive. I bless you. I wish what you need to do did not ever have to be done. This belongs on Anderson Cooper's "Ridiculist" Good luck and may your God and mine bless you!

Jan. 21 2012 06:01 PM
John Murphy

I think we as patients should own any data that our devices collect. after all the devices are bought and paid for by our insurance so they are ours. I dont think it is right to have information withheld which belongs to us.

Jan. 21 2012 02:21 PM

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