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Great. I hope my medical data is sold so they can use it to improve my healthcare. Americans are hysterical when it comes to healthcare privacy. Meanwhile, the

Great. I hope my medical data is sold so they can use it to improve my healthcare. Americans are hysterical when it comes to healthcare privacy. Meanwhile, the rest of the world carries on leaving us behind. When I was in Taiwan, people had national cards that carried a digital history of their medical records on the card. When I explained this to a nurse here in the US she looked at me like I was crazy. Like I had suggested we send men to mars.

blakesterz 10y ago
>> Great. I hope my medical data is sold so they can use it to improve my healthcare. Me too. But I also would like to at the very least know who has my data. I'd also like to know what they're doing with it that isn't part of anyone working to improve my healthcare. I'd like to know when it's part of a data breach as well. I'd like to know where it's bought and sold, and who is correlating it with other data sets. If it's used to improve my healthcare, GREAT! If it's commoditized and sold off again and again, then stolen, and sold and resold... I don't know if that's so great. I don't know how we make it available for the GREAT, and keep it out of all that other stuff.
kafkaesq 10y ago
I hope my medical data is sold so they can use it to improve my healthcare. Good for you. But the point is it should be, you know, a choice.
woodandsteel 10y ago
What about when (not if) the database gets hacked and sold on the dark web?
pasbesoin 10y ago
Several decades ago, when trying to purchase individual health insurance (didn't currently have an employer-enabled option), I was denied because of a single visit to a psychologist within the requested two year medical history (time frames for these have since greatly expanded). Not for ongoing treatment, but for one isolated appointment. And this was for a plan that provided very limited mental health benefits, anyway. More recently, I was -- belatedly, and after several years of mis-diagnosis of occasional minor discomfort -- diagnosed with a very minor hernia. The well-regarded surgeon I was referred to said he would not operate on it; it was too minor. The prudent course of action was to leave it alone. Nonetheless, when subsequently (once again, due to the nature of the U.S. job market and health insurance's codependent relationship with it) attempting to purchase private insurance (this was before the ACA), I was initially denied. This time, the insurer made some minor error in processing my application, and I happened to have an influential connection to another company that had a partnership with that insurer. Someone with whom I'd had a long professional relationship was able to leverage this to get my application re-evaluated, and eventually I was offered a policy... I'll just say that this did not come as the result of normal channels. I still had to accept an exclusion for the condition. Americans are hysterical about their health care privacy for very good reasons. In other countries, such data might be accumulated and used in epidemiological studies and in efforts to provide better, more effective, and more cost-effective care. It makes sense to mine such data for such insights. Here, in the U.S., such data are accumulated by private interests that profit by turning "insurance" into cherry-picked participation and discrimination. Every transition, every "life event" that has a participant re-acquiring health insurance, is worked to the maximum to exclude those who are most likely to claim benefits. And with the ever increasing instability in the U.S. labor marketplace, such opportunities increasingly abound. People increasingly don't stick with one company for a career or even a significant fraction of one. And particularly at more elevated ages, when health care needs tend to increase, a career transition is likely to leave you with no employer-provided health care insurance. As I sometimes say, it's like we in the U.S. are paying "whole insurance" rates for what has effectively become "term insurance." The ACA addressed this, to some extent, although the prices were getting out of control due to weaknesses engineered in by the opposition as it was written and fostered after it was enacted by e.g. hamstringing the law through lack of budget allocations. I fear for what is to come. Where every bit of health care data on me is once again used not to further science and effective treatment, but rather to exclude me if and as soon as I start to look like an expense. Americans are paranoid about their health care privacy for damned good reasons. And I didn't even begin to address the topic of employer discrimination. Many of you are familiar with this with respect to age -- common in the "tech world" and particularly "programming." Health is another, similar vector. Yeah, there are laws, supposedly. And then there is reality. And... age as a simplistic, non-specific means of assigning a speculative health rating to an applicant. One that nobody needs to address in subpoena-able fashion. I believe a crucial component of enabling better treatment through data sharing and mining, would be to ensure -- with some very strong laws with felony penalties for violation -- that said data are never used to discriminate against individuals nor categories with respect to health insurance coverage nor pricing. If you're healthy, you're blessed. If not, society's got your back. Not for a "free ride", but for the care you need to live the best life you can -- one that hopefully, in turn, benefits us all. And health care coverage helps keep small, less expensive problems from going untreated and growing into large, expensive ones. It's not just moral, by most people's definitions; it's also cost-effective. P.S. At least, this is my view. Recently, I've been struggling with the observation that while this seems to me to be both rational and compassionate, much of the world persistently does not work this way and apparently shows little inclination to really begin to do so. It's a pretty lonely feeling, as this continues to sink in. I've kept hoping, for years, things will get better. Believing in "progress." But I'm losing that hope, with respect to human nature. Particularly in larger, significantly anonymous groups and where local disparities can and are arbitraged by larger entities to the detriment of individuals. Where "humanity" is removed from consideration and every possible cost is externalized. Where no one is accountable for the failures. Anyway. It would seem we have a lot to learn from each other. But that knowledge is being hijacked by systems -- people -- using it to pit us against each other.
- alexmingoia 10y ago
  Discrimination should be addressed by laws against it, not by locking up medical records to the point that t literally kills people and damages our healthcare system. Same with preexisting conditions. Again other countries don't have this problem.
  - pasbesoin 10y ago
    Well, look at what is happening to the ACA, which was a step in that direction with its elimination of pre-existing conditions as a factor used to determine whether to offer insurance. Americans have learned the hard way that people can and will use their health care information against them. And that even commitments in law towards eliminating this face strong counter-pressure and reversal. The reality is discrimination. And there is no reliable, dependable change to this on the horizon.

blakesterz 10y ago

>> Great. I hope my medical data is sold so they can use it to improve my healthcare. Me too. But I also would like to at the very least know who has my data. I'd also like to know what they're doing with it that isn't part of anyone working to improve my healthcare. I'd like to know when it's part of a data breach as well. I'd like to know where it's bought and sold, and who is correlating it with other data sets. If it's used to improve my healthcare, GREAT! If it's commoditized and sold off again and again, then stolen, and sold and resold... I don't know if that's so great. I don't know how we make it available for the GREAT, and keep it out of all that other stuff.

kafkaesq 10y ago

I hope my medical data is sold so they can use it to improve my healthcare. Good for you. But the point is it should be, you know, a choice.

woodandsteel 10y ago

What about when (not if) the database gets hacked and sold on the dark web?

pasbesoin 10y ago

Several decades ago, when trying to purchase individual health insurance (didn't currently have an employer-enabled option), I was denied because of a single visit to a psychologist within the requested two year medical history (time frames for these have since greatly expanded). Not for ongoing treatment, but for one isolated appointment. And this was for a plan that provided very limited mental health benefits, anyway. More recently, I was -- belatedly, and after several years of mis-diagnosis of occasional minor discomfort -- diagnosed with a very minor hernia. The well-regarded surgeon I was referred to said he would not operate on it; it was too minor. The prudent course of action was to leave it alone. Nonetheless, when subsequently (once again, due to the nature of the U.S. job market and health insurance's codependent relationship with it) attempting to purchase private insurance (this was before the ACA), I was initially denied. This time, the insurer made some minor error in processing my application, and I happened to have an influential connection to another company that had a partnership with that insurer. Someone with whom I'd had a long professional relationship was able to leverage this to get my application re-evaluated, and eventually I was offered a policy... I'll just say that this did not come as the result of normal channels. I still had to accept an exclusion for the condition. Americans are hysterical about their health care privacy for very good reasons. In other countries, such data might be accumulated and used in epidemiological studies and in efforts to provide better, more effective, and more cost-effective care. It makes sense to mine such data for such insights. Here, in the U.S., such data are accumulated by private interests that profit by turning "insurance" into cherry-picked participation and discrimination. Every transition, every "life event" that has a participant re-acquiring health insurance, is worked to the maximum to exclude those who are most likely to claim benefits. And with the ever increasing instability in the U.S. labor marketplace, such opportunities increasingly abound. People increasingly don't stick with one company for a career or even a significant fraction of one. And particularly at more elevated ages, when health care needs tend to increase, a career transition is likely to leave you with no employer-provided health care insurance. As I sometimes say, it's like we in the U.S. are paying "whole insurance" rates for what has effectively become "term insurance." The ACA addressed this, to some extent, although the prices were getting out of control due to weaknesses engineered in by the opposition as it was written and fostered after it was enacted by e.g. hamstringing the law through lack of budget allocations. I fear for what is to come. Where every bit of health care data on me is once again used not to further science and effective treatment, but rather to exclude me if and as soon as I start to look like an expense. Americans are paranoid about their health care privacy for damned good reasons. And I didn't even begin to address the topic of employer discrimination. Many of you are familiar with this with respect to age -- common in the "tech world" and particularly "programming." Health is another, similar vector. Yeah, there are laws, supposedly. And then there is reality. And... age as a simplistic, non-specific means of assigning a speculative health rating to an applicant. One that nobody needs to address in subpoena-able fashion. I believe a crucial component of enabling better treatment through data sharing and mining, would be to ensure -- with some very strong laws with felony penalties for violation -- that said data are never used to discriminate against individuals nor categories with respect to health insurance coverage nor pricing. If you're healthy, you're blessed. If not, society's got your back. Not for a "free ride", but for the care you need to live the best life you can -- one that hopefully, in turn, benefits us all. And health care coverage helps keep small, less expensive problems from going untreated and growing into large, expensive ones. It's not just moral, by most people's definitions; it's also cost-effective. P.S. At least, this is my view. Recently, I've been struggling with the observation that while this seems to me to be both rational and compassionate, much of the world persistently does not work this way and apparently shows little inclination to really begin to do so. It's a pretty lonely feeling, as this continues to sink in. I've kept hoping, for years, things will get better. Believing in "progress." But I'm losing that hope, with respect to human nature. Particularly in larger, significantly anonymous groups and where local disparities can and are arbitraged by larger entities to the detriment of individuals. Where "humanity" is removed from consideration and every possible cost is externalized. Where no one is accountable for the failures. Anyway. It would seem we have a lot to learn from each other. But that knowledge is being hijacked by systems -- people -- using it to pit us against each other.

alexmingoia 10y ago
Discrimination should be addressed by laws against it, not by locking up medical records to the point that t literally kills people and damages our healthcare system. Same with preexisting conditions. Again other countries don't have this problem.
- pasbesoin 10y ago
  Well, look at what is happening to the ACA, which was a step in that direction with its elimination of pre-existing conditions as a factor used to determine whether to offer insurance. Americans have learned the hard way that people can and will use their health care information against them. And that even commitments in law towards eliminating this face strong counter-pressure and reversal. The reality is discrimination. And there is no reliable, dependable change to this on the horizon.