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Humans have a long and storied record of using tools and information to do malicious things. But we also have a long and storied record of using tools and infor

Humans have a long and storied record of using tools and information to do malicious things. But we also have a long and storied record of using tools and information to produce the incredible advances of the past few centuries, where the median life expectancy has nearly doubled from the baseline over the past 50k years. Personally, I would really prefer a system where health information was centralized and easily transferrable to healthcare providers, as I think it would be massively better if we could learn from the bad outcomes of others rather than creating thousands of information silos that have to learn these expensive lessons in parallel, and it would also allow us to know the prices of healthcare services thereby enabling efficient markets to develop.

chaps 4y ago
Are you suggesting that this location information is "health" data and is okay for them to use and store?
- jonathankoren 4y ago
  Yes. Location data is health data. It has been since 1854. https://en.wikipedia.org/wiki/1854_Broad_Street_cholera_outbreak https://en.wikipedia.org/wiki/1854_Broad_Street_cholera_outb...
  - chaps 4y ago
    Just because data is used in understanding something related to health doesn't mean that it's "health data" in a legal, protected, or regulatory sense. Nor does it mean that they should have de facto access to the data without limitations. Hell, the closest thing I'm aware of that's close to it (at least under HIPAA) is the name or address of a hospital that a person's visited. Would you be okay if the CDC purchased data from period-tracking apps to track periods? Or how many bottles of soap I purchase in a year? Or how much booze everyone buys?
    - jonathankoren 4y ago
      - chaps 4y ago
        My problem is absolutely related to data privacy and I'm not sure why you think otherwise, let alone why you think I'm interested in spreading disease (seriously, what.). At a practical level, one of my bigger concerns is that they've very likely made it possible to FOIA for the location information they bought.
        brewdad 4y ago
        It would be cheaper to buy the data on the open market than to pay the research fees for a FOIA request. A LOT more timely too.
        jonathankoren 4y ago
        The data couldnt be foiaed because it’s not the government’s. Anyway, someone could just buy it direct anyway. This is why I don’t understand your concerns. You start off freaking out about the public health officials having widely available location data, and keep harping about the government, but never once focusing on the actual data collection by private entities. Come on. Do you really think Foursquare is HIPPA compliant?
        chaps 4y ago
        1. That's not really how FOIA works. 2. It's spelled HIPAA. 3. Foursquare isn't bound by HIPAA because they're not a covered entity, unlike the CDC. 4. Believe me, I'm livid about the selling and collection by private entities. 5. I'm only bringing up the FOIA side of things in an attempt to highlight something that you might not have considered. Judging by your misunderstanding of HIPAA and FOIA, it seems that you could stand to consider more.
    - modriano 4y ago
      Can you provide a link the statute or other ratified text that you're basing your "health data" categorization on? By the way, HIPAA privacy rules regulate the use and disclosure of Protected Health Information (PHI) in healthcare treatment, payment and operations by covered entities. Per this CDC FAQ [0]: """ What information is protected? All medical records and other individually identifiable health information used or disclosed by a covered entity in any form, whether electronically, on paper, or orally, are covered by the final rule. For what disclosures and uses must consent be obtained by a provider? The Privacy Rule states that: In general, “[a] covered health care provider [with a direct treatment relationship] must obtain the individual’s consent,…prior to using or disclosing protected health information to carry out treatment, payment, or health care operations.” (See section [§] 164.506, 65 Federal Register [F.R.] p. 82810, for complete requirements.) """ Non-covered entities, like commercial data brokers, are free to sell PHI-containing data (assuming they aren't contractually prevented from doing so), and unless the data said broker sells is from a covered entity, no plausible interpretation bars the CDC from buying data available to anyone. > Would you be okay if the CDC purchased data from period-tracking apps to track periods? Or how many bottles of soap I purchase in a year? Or how much booze everyone buys? Legally? Yes, unambiguously. Morally? Depends on what they're do with their analysis. If it's for disease control and/or harm prevention, that seems to fall squarely within their scope. [0] https://www.cdc.gov/nhsn/hipaa/index.html https://www.cdc.gov/nhsn/hipaa/index.html
- modriano 4y ago
  As a data scientist, I am oriented towards mining data for valid insights that allow us to answer important questions, such as * "Who was in close proximity (~15m) of this known COVID superspreader event?" or * "Who has spent a large amount of time in this region where the rate of cancer is 6 standard deviations above the statewide rate?" So yeah, I'm firmly asserting location data enables us to explore a lot of important problems that negatively impact people's health, and I think learning from the past (ie from data) is how we improve the future.

chaps 4y ago

Are you suggesting that this location information is "health" data and is okay for them to use and store?

jonathankoren 4y ago
Yes. Location data is health data. It has been since 1854. https://en.wikipedia.org/wiki/1854_Broad_Street_cholera_outbreak https://en.wikipedia.org/wiki/1854_Broad_Street_cholera_outb...
- chaps 4y ago
  Just because data is used in understanding something related to health doesn't mean that it's "health data" in a legal, protected, or regulatory sense. Nor does it mean that they should have de facto access to the data without limitations. Hell, the closest thing I'm aware of that's close to it (at least under HIPAA) is the name or address of a hospital that a person's visited. Would you be okay if the CDC purchased data from period-tracking apps to track periods? Or how many bottles of soap I purchase in a year? Or how much booze everyone buys?
  - jonathankoren 4y ago
    - chaps 4y ago
      My problem is absolutely related to data privacy and I'm not sure why you think otherwise, let alone why you think I'm interested in spreading disease (seriously, what.). At a practical level, one of my bigger concerns is that they've very likely made it possible to FOIA for the location information they bought.
      - brewdad 4y ago
        It would be cheaper to buy the data on the open market than to pay the research fees for a FOIA request. A LOT more timely too.
      - jonathankoren 4y ago
        The data couldnt be foiaed because it’s not the government’s. Anyway, someone could just buy it direct anyway. This is why I don’t understand your concerns. You start off freaking out about the public health officials having widely available location data, and keep harping about the government, but never once focusing on the actual data collection by private entities. Come on. Do you really think Foursquare is HIPPA compliant?
        chaps 4y ago
        1. That's not really how FOIA works. 2. It's spelled HIPAA. 3. Foursquare isn't bound by HIPAA because they're not a covered entity, unlike the CDC. 4. Believe me, I'm livid about the selling and collection by private entities. 5. I'm only bringing up the FOIA side of things in an attempt to highlight something that you might not have considered. Judging by your misunderstanding of HIPAA and FOIA, it seems that you could stand to consider more.
  - modriano 4y ago
    Can you provide a link the statute or other ratified text that you're basing your "health data" categorization on? By the way, HIPAA privacy rules regulate the use and disclosure of Protected Health Information (PHI) in healthcare treatment, payment and operations by covered entities. Per this CDC FAQ [0]: """ What information is protected? All medical records and other individually identifiable health information used or disclosed by a covered entity in any form, whether electronically, on paper, or orally, are covered by the final rule. For what disclosures and uses must consent be obtained by a provider? The Privacy Rule states that: In general, “[a] covered health care provider [with a direct treatment relationship] must obtain the individual’s consent,…prior to using or disclosing protected health information to carry out treatment, payment, or health care operations.” (See section [§] 164.506, 65 Federal Register [F.R.] p. 82810, for complete requirements.) """ Non-covered entities, like commercial data brokers, are free to sell PHI-containing data (assuming they aren't contractually prevented from doing so), and unless the data said broker sells is from a covered entity, no plausible interpretation bars the CDC from buying data available to anyone. > Would you be okay if the CDC purchased data from period-tracking apps to track periods? Or how many bottles of soap I purchase in a year? Or how much booze everyone buys? Legally? Yes, unambiguously. Morally? Depends on what they're do with their analysis. If it's for disease control and/or harm prevention, that seems to fall squarely within their scope. [0] https://www.cdc.gov/nhsn/hipaa/index.html https://www.cdc.gov/nhsn/hipaa/index.html
modriano 4y ago
As a data scientist, I am oriented towards mining data for valid insights that allow us to answer important questions, such as * "Who was in close proximity (~15m) of this known COVID superspreader event?" or * "Who has spent a large amount of time in this region where the rate of cancer is 6 standard deviations above the statewide rate?" So yeah, I'm firmly asserting location data enables us to explore a lot of important problems that negatively impact people's health, and I think learning from the past (ie from data) is how we improve the future.