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A comment on Theranos Voids Two Years of Edison Blood-Test Results. Parent comment

Re:Theranos Voids Two Years of Edison Blood-Test Results by pvnick on Wednesday May 18, 2016 @10:23PM (#11727511)
Actually, sufficiently aggregated health data is generally fine to release publicly since it can not be tied to an individual. Anonymized data you must be very careful with, since individual data elements can frequently be combined to re-identify someone.
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Re:Theranos Voids Two Years of Edison Blood-Test Results by sopooneo on Wednesday May 18, 2016 @10:36PM (#11727565)
In support of your point about "sufficently aggregated" data, I occasionally work on projects that publish aggregate health statistics, and you have to be very careful about the size of your denominators. For instance, even without telling what numbers you are dividing, you probably couldn't publish the percentage of HIV positive results among pacific islanders in Nebraska. Because there might be only six such people.
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Re:Theranos Voids Two Years of Edison Blood-Test Results by sib on Wednesday May 18, 2016 @11:47PM (#11727822)
Oddly enough, it turns out to be 836(!), which is definitely higher than I would have guessed.

http://www.infoplease.com/us/census/data/nebraska/demographi...

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Re:Theranos Voids Two Years of Edison Blood-Test Results by semi-extrinsic on Thursday May 19, 2016 @01:46AM (#11728264)
Those are presumably not all HIV positive.
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Re:Theranos Voids Two Years of Edison Blood-Test Results by sokoloff on Friday May 20, 2016 @09:11AM (#11737461)
Yes, but what personal or privacy-compromising information does "6 of this list of 836 people have HIV" convey? That that population has a higher-than-normal incidence of HIV as compared the US at large? That's potentially valuable aggregate health information, but I don't see how that compromises anyone's privacy.

It would if you reported "6 of 836 were HIV+ on Tuesday. The next day, a new couple moved into town. On Wednesday, 7 of 838 were HIV+." I don't think the aggregated data that is contemplated here is released on nearly that frequency.

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Re:Theranos Voids Two Years of Edison Blood-Test Results by pvnick on Wednesday May 18, 2016 @10:52PM (#11727626)
Good point!
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Re:Theranos Voids Two Years of Edison Blood-Test Results by facetube on Wednesday May 18, 2016 @11:44PM (#11727802)
IIRC this is why HHS and HIPAA regulations specify "all ages over 89" as protected health information for purposes of data deidentification – there just aren't that many people who have lived that long.
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Re:Theranos Voids Two Years of Edison Blood-Test Results by dragonwriter on Thursday May 19, 2016 @12:12AM (#11727918)
It also specifies all date elements for patient-specific events (including treatment) more specific than the year must be removed for deidentification generally.
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Re:Theranos Voids Two Years of Edison Blood-Test Results by robryk on Thursday May 19, 2016 @05:41AM (#11729022)
So "I treated a skier with a broken leg in the last skiing season" is something a doctor can't say? (Skiing season is shorter than a year.)

Actually, giving a year of a winter/summer sport-related accident already provides a shorter window for when the accident has occurred. So should all case reports about such be giving at least a two year long window?

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Re:Theranos Voids Two Years of Edison Blood-Test Results by dekhn on Wednesday May 18, 2016 @10:39PM (#11727576)
All of the responses to my comment are missing the point: you're discussing medical researchers. This was a random doctor in the affected area who spoke to reporters.

I'm quite aware of what is acceptable to release in a medical context; this was not that.

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Re:Theranos Voids Two Years of Edison Blood-Test Results by pvnick on Wednesday May 18, 2016 @10:51PM (#11727622)
I'm not sure what the problem is though. In all likelihood the doctor has been trained on HIPAA procedures.
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Re:Theranos Voids Two Years of Edison Blood-Test Results by dragonwriter on Thursday May 19, 2016 @12:15AM (#11727922)
And yet seems to have violated them (I've cited the specific section of regs elsewhere in the thread). But deidentification is one of those things people who don't freak with it often, even trained in the rules, always seem to think is easier than it is.
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Re:Theranos Voids Two Years of Edison Blood-Test Results by dekhn on Thursday May 19, 2016 @09:27AM (#11729992)
I never said the doctor violated a law. I think what the doctor said (in speaking about a specific patient): "The doctor said one corrected report is for a patient she sent to the emergency room after receiving abnormally elevated test results from Theranos in late 2014." was ethically dubious.

Most of the people who are replying negatively to my comments are misinterpreting my position: either suggesting that I implied there was a HIPAA violation, or that I think medical research data should be suppressed. Neither of those is true.

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Re:Theranos Voids Two Years of Edison Blood-Test Results by CamperBob2 on Wednesday May 18, 2016 @11:03PM (#11727664)
I'm quite aware of what is acceptable to release in a medical context; this was not that.

I'm sure you'll be able to cite the regulation that was broken, then.

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