14 ms·

As someone in the biomedical sciences in the United States, I wish the barrier to access patient information was much lower. The pendulum has swung too far the

As someone in the biomedical sciences in the United States, I wish the barrier to access patient information was much lower. The pendulum has swung too far the other direction--toward too much patient protection at the expense of medical progress. Where I work, we've spent nearly 2 years trying to get approval to collect samples (with patient consent) that are being thrown away. No one on the ethics board wants to sign off on it (maybe because they are afraid of being blamed if something bad happens?). We agreed to pay ridiculous fees to de-identify samples and are crossing our fingers that we will finally get the samples. I am glad to see that Google got access to this data and is not being punished. There has to be balance so that medical science can move forward at a reasonable rate

ocdtrekkie 9y ago
I totally understand why you could find it irritating to have difficulty getting information with patient consent (this sounds like the sort of frustrating bureaucracy I also deal with regularly), but how does that translate into happiness Google was able to violate people's privacy without their consent?
k-mcgrady 9y ago
>> There has to be balance so that medical science can move forward at a reasonable rate. No there doesn't. If I don't want my personal information being provided to Google by the NHS it shouldn't happen. In a country where private healthcare isn't an option for most, the only option (the NHS) shouldn't be giving personal data to private, foreign companies, in breach of the law. 'It'll make my job easier' is awful reasoning for violating privacy and the law.
- jostmey 9y ago
  I haven't been able to do my job with respect to this project. There's a distinction between hard and impossible
  - k-mcgrady 9y ago
    Fair point. If you were in the UK I would say that means you're trying to do a job that requires you to break the law and it's been decided that it's in the best interests of society that you don't do that job. Obviously as you said you're in the US and it sounds like your situation is very different (you haven't identified a law stopping your work just an ethics board that won't sign off for a reason you don't know).
    - jostmey 9y ago
      But there are laws about protecting patient information such as the HIPAA laws, which make it much harder to do research and to start a business that processes patient information. These laws become a major consideration for any committee that is deciding whether or not to approve access to data/samples
    - philh 9y ago
      > it's been decided that it's in the best interests of society that you don't do that job. Remember that what has been decided, and what is actually the case, are not always the same. That's why people advocate for changing the law. OP thinks the law is too restrictive; saying "well that's what the law is" is not much of a reply.
      - k-mcgrady 9y ago
        Completely agree, I didn't mean to imply 'because it's law it's what people want' but I don't see any movement in the UK that any significant number of people would want there health data being shared with corporations.
- lucio 9y ago
  It'll make my job of saving lives/advance medical field more easy IS a good reasoning for wanting a more streamlined mechanism to share statistical data.
  - k-mcgrady 9y ago
    No it's not. Arming all police officers, internment, and operating a shoot to kill policy would make stopping terrorism and saving lives more easy. We don't do that. Just because a particular right/freedom seems less important than an other doesn't make it so.
    - drusepth 9y ago
      I'm not sure "arming police to better commit violence and take lives" is on the same level as "peacefully enabling our doctors to be better doctors". One directly causes harm to people. The other _potentially_ causes harm, only if that data gets into the wrong hands and/or is misused. I think saving more lives is worth considering the tradeoff and striking a balance somewhere in the middle (e.g. gathering consent, opting in/out, transparently seeing who what data is shared with, etc).
      - k-mcgrady 9y ago
        I'm not sure "enabling reckless doctors and corporations to misuse, lose, and sell my personal data" is on the same level as... My point being that your twisting of my words to the point they are unrecognisable is silly. Some people may look at my policing suggestion as a positive you look at it as a negative. Same thing applies to privacy. You may trust doctors (and corporations) and mistrust the police, others feel the opposite way - or trust neither.
      - kuschku 9y ago
        > "peacefully enabling our doctors to be better doctors". It is not that. It’s "giving all information that exists about your medical history to a corporation that already tracks 70% of all payment processes and 96% of website accesses, and which aims to fully control your life". That’s a 1984 scenario if I’ve ever seen one.
- beisner 9y ago
  I think I instinctively agree with your argument, although the particulars of this topic have made me wonder a bit about absolute privacy in the human health space. Specifically, we generally consider privacy not to be an absolute right, but to be one moderated by the rights of the public (i.e. if there is reasonable suspicion that you have committed a crime, police are allowed to violate your privacy and conduct searches with a warrant). I wonder at what point this might extend to issues of medical research/public health. We already know that (in the US at least) cases of certain illnesses must be reported to state/federal authorities, which to some degree violates the privacy of the patient. The selection of what sorts of data are shared is somewhat arbitrary; where is the right place to draw the line? If increasing ease of access (and perhaps violating privacy at some level) to millions of health records could bring about the discovery of more-effective predictors for heart disease 10 years faster than without this access, should this trade-off be made? I'm not saying it should, but it makes me wonder where the line should be drawn. I also recognize that this might be a false binary, that streamlining the process might be orthogonal to maintaining privacy, but for the sake of argument let's assume they are not totally orthogonal.
  - plafl 9y ago
    I agree mostly with you but I will add that I think that sacrificing privacy for the benefit of the majority is shortsighted in this case. People must be reassured they can talk freely to their doctors (as they do with their lawyers). I think this is way more important for public health than any study that may or may not improve public health.
  - k-mcgrady 9y ago
    I agree balancing rights is important. I would argue that the link between more data and curing a disease is too weak to swing the scales. Another major issue is that you'd be violating rights on a major scale. It would be very easy to make a similar argument that, for example, recording everyones communications would stop or significantly reduce crime. I also don't think it's a debate we really need. More and more people are wearing health tracking devices. There have been research studies done through mobile apps. People are tracking health data themselves more and more and a lot of those people are going to be willing to share it. Let it happen naturally instead of opening the floodgates and leaving people without a choice.
- tim333 9y ago
  There seems a compromise possible on the "with patient consent" bit. Maybe by default researchers could have some sort of anonymized data and patients can opt out if they want no data sharing or in if they don't mind researchers seeing it all. Personally I don't mind Google or similar seeing my not very interesting data.
  - k-mcgrady 9y ago
    With patient consent I don't see why there would be an issue (although patients would need to be well informed - T&C's like we have for websites on health information would be terrible and abused). I'd say it should be opt-in though.
  - chopin 9y ago
    Imho there is no such thing as anonymized health care data. If the data is meaningful each dataset contains enough bits of information to de-anoymize the data when combined with other data sets. This makes Google especially dangerous as they have already much or all of the data required for de-anonymization. Patient consent would make the data much less meaningful as it would remove datasets in a non-random way (better educated people might more likely opt-out). So that's no good solution either. I had recently a doctors visit and was asked exactly that. I opted out as I have no control over the data when released.
- matz1 9y ago
  Sure, if that what you believe you should fight for it just like other people who think that using personal information for advancement of science is ok will fight for it.
- AndrewKemendo 9y ago
  You also have the right to not get yourself vaccinated, but is that best for society? The reality is, the more data we have on people the more we can help people make better decisions across their lives. If aggregate medical data identifies a way to save lives or help curb waste/reduce C02 emissions etc... then we should be doing that.
rubatuga 9y ago
Why are you glad that Google got access to illegal data? Why do things like patient confidentiality and privacy exist? It’s not like google should be immune to punishment, and it is completely unethical what the NHS and google have done, especially to the tune of a few millions violations. I’m surprised that because you had a hard time collecting patient data and that you think that medical progress is too slow, you believe illegal methods of collection are justified.
- beisner 9y ago
  There are a large contingent of people who have more faith in Google to be more ethical than most government organizations, the NHS included. As someone who has been party to the internals at Google, and to some lesser extent with government health organizations, I am truly not sure which side I fall on these days. So I can understand why someone would be okay with Google acquiring the data.
  - Symbiote 9y ago
    The proportion of people who trust Google more than the NHS/government is much lower in the UK compared to the USA.
- peoplewindow 9y ago
  It's not quite so black and white. DeepMind didn't know what they were doing was illegal. It took the ICO a year to make a decision and they set the punishment to zero, so apparently they didn't really know either. It still isn't obvious even in retrospect - the NHS itself agreed to the data transfer, and they were the owners of the data, so presumably it was the NHS that broke the law rather than Google. With respect to patient confidentiality, don't blow it out of proportion. The NHS does not have strong controls on patient data. Breaches are common: http://www.dailymail.co.uk/news/article-2833960/NHS-data-snooped-six-times-day-Staff-caught-looking-records-friends-family-love-rivals.html http://www.dailymail.co.uk/news/article-2833960/NHS-data-sno... The FOI data discussed there is of course a minimum. Real breach levels are surely far higher given that records are mostly still stored on paper (no real way to know how many people see it). The NHS could protect data much more strongly than it does, but it chooses to invest its time and money elsewhere, which is probably the right decision. Finally, leaks of patient data don't kill people, but absence of life-saving drugs that could have been developed via better data do. It's easy to argue that the default should be to make large-scale datasets available to drug and tech firms. The cost/benefit ratio seems extremely positive.
blub 9y ago
Such information should be difficult to access due to the grave consequences of its misuse. And of course greedy insurance companies, advertisers and employers would be more than happy to misuse it, if it means making more money. Perhaps you'd like to have chat with the people on that ethics board, you might learn a thing or two. The medical science can move forward without disregarding people's rights.
deleted 9y ago
[deleted]
whatshisface 9y ago
All they'd have to do is ask. I'd say no, but all they had to do was ask.
pasbesoin 9y ago
I would be comfortable sharing my data (for the greater good) if I had a ironclad guarantee -- that I could believe -- that it wouldn't be used against me. The U.S. is nowhere near that. So, no data for collective you -- except when you rip it from my fear-clenched hands, regardless. Think I'm speaking in the abstract? In my 20's -- a few decades ago -- I had to purchase individual insurance. I had one -- one -- appointment with a psychologist in the prior two years of medical history then requested. A "touchbase" from some childhood counseling. Fortunately, a friend of a friend was able to "unofficially" run my insurance application by the underwriting team. If it had been "officially" processed, the result would have ended up in a shared database of application results. (Yes, the insurance companies in the U.S. have long shared their underwriting decisions with each other -- surprise!) The word back on my application: Denied! Why? (Again, I had an inside track on the process not normally available to the applicant.) Because of that one -- one -- counseling visit, in isolation and with no attendant diagnosis. I learned my lesson. I will never share such data, that can be used against me, without ironclad assurances. And, as the past couple of decades' experience, both direct and learning by reading and observing the news and other cases, have taught me, such assurance is pretty much impossible to achieve -- even commitments made in law are taken back as soon as power shifts. The one hope for this changing that I see? Universal health care coverage. Because then, at a societal level, you are covered regardless. Your individual history no longer plays a role in whether you are covered. I hope that the logical, scientific side of medical science starts to see things this way: That the future, expansion, and greater facility and efficacy of their work, depends on it.
xiphias 9y ago
Patients (all of us) should be able to control the information and get health data in return. I'd love to just get an email with all my records and a link to a Google health app where I can get to know everything about my health that can ve inferred

ocdtrekkie 9y ago

I totally understand why you could find it irritating to have difficulty getting information with patient consent (this sounds like the sort of frustrating bureaucracy I also deal with regularly), but how does that translate into happiness Google was able to violate people's privacy without their consent?

k-mcgrady 9y ago

>> There has to be balance so that medical science can move forward at a reasonable rate. No there doesn't. If I don't want my personal information being provided to Google by the NHS it shouldn't happen. In a country where private healthcare isn't an option for most, the only option (the NHS) shouldn't be giving personal data to private, foreign companies, in breach of the law. 'It'll make my job easier' is awful reasoning for violating privacy and the law.

jostmey 9y ago
I haven't been able to do my job with respect to this project. There's a distinction between hard and impossible
- k-mcgrady 9y ago
  Fair point. If you were in the UK I would say that means you're trying to do a job that requires you to break the law and it's been decided that it's in the best interests of society that you don't do that job. Obviously as you said you're in the US and it sounds like your situation is very different (you haven't identified a law stopping your work just an ethics board that won't sign off for a reason you don't know).
  - jostmey 9y ago
    But there are laws about protecting patient information such as the HIPAA laws, which make it much harder to do research and to start a business that processes patient information. These laws become a major consideration for any committee that is deciding whether or not to approve access to data/samples
  - philh 9y ago
    > it's been decided that it's in the best interests of society that you don't do that job. Remember that what has been decided, and what is actually the case, are not always the same. That's why people advocate for changing the law. OP thinks the law is too restrictive; saying "well that's what the law is" is not much of a reply.
    - k-mcgrady 9y ago
      Completely agree, I didn't mean to imply 'because it's law it's what people want' but I don't see any movement in the UK that any significant number of people would want there health data being shared with corporations.
lucio 9y ago
It'll make my job of saving lives/advance medical field more easy IS a good reasoning for wanting a more streamlined mechanism to share statistical data.
- k-mcgrady 9y ago
  No it's not. Arming all police officers, internment, and operating a shoot to kill policy would make stopping terrorism and saving lives more easy. We don't do that. Just because a particular right/freedom seems less important than an other doesn't make it so.
  - drusepth 9y ago
    I'm not sure "arming police to better commit violence and take lives" is on the same level as "peacefully enabling our doctors to be better doctors". One directly causes harm to people. The other _potentially_ causes harm, only if that data gets into the wrong hands and/or is misused. I think saving more lives is worth considering the tradeoff and striking a balance somewhere in the middle (e.g. gathering consent, opting in/out, transparently seeing who what data is shared with, etc).
    - k-mcgrady 9y ago
      I'm not sure "enabling reckless doctors and corporations to misuse, lose, and sell my personal data" is on the same level as... My point being that your twisting of my words to the point they are unrecognisable is silly. Some people may look at my policing suggestion as a positive you look at it as a negative. Same thing applies to privacy. You may trust doctors (and corporations) and mistrust the police, others feel the opposite way - or trust neither.
    - kuschku 9y ago
      > "peacefully enabling our doctors to be better doctors". It is not that. It’s "giving all information that exists about your medical history to a corporation that already tracks 70% of all payment processes and 96% of website accesses, and which aims to fully control your life". That’s a 1984 scenario if I’ve ever seen one.
beisner 9y ago
I think I instinctively agree with your argument, although the particulars of this topic have made me wonder a bit about absolute privacy in the human health space. Specifically, we generally consider privacy not to be an absolute right, but to be one moderated by the rights of the public (i.e. if there is reasonable suspicion that you have committed a crime, police are allowed to violate your privacy and conduct searches with a warrant). I wonder at what point this might extend to issues of medical research/public health. We already know that (in the US at least) cases of certain illnesses must be reported to state/federal authorities, which to some degree violates the privacy of the patient. The selection of what sorts of data are shared is somewhat arbitrary; where is the right place to draw the line? If increasing ease of access (and perhaps violating privacy at some level) to millions of health records could bring about the discovery of more-effective predictors for heart disease 10 years faster than without this access, should this trade-off be made? I'm not saying it should, but it makes me wonder where the line should be drawn. I also recognize that this might be a false binary, that streamlining the process might be orthogonal to maintaining privacy, but for the sake of argument let's assume they are not totally orthogonal.
- plafl 9y ago
  I agree mostly with you but I will add that I think that sacrificing privacy for the benefit of the majority is shortsighted in this case. People must be reassured they can talk freely to their doctors (as they do with their lawyers). I think this is way more important for public health than any study that may or may not improve public health.
- k-mcgrady 9y ago
  I agree balancing rights is important. I would argue that the link between more data and curing a disease is too weak to swing the scales. Another major issue is that you'd be violating rights on a major scale. It would be very easy to make a similar argument that, for example, recording everyones communications would stop or significantly reduce crime. I also don't think it's a debate we really need. More and more people are wearing health tracking devices. There have been research studies done through mobile apps. People are tracking health data themselves more and more and a lot of those people are going to be willing to share it. Let it happen naturally instead of opening the floodgates and leaving people without a choice.
tim333 9y ago
There seems a compromise possible on the "with patient consent" bit. Maybe by default researchers could have some sort of anonymized data and patients can opt out if they want no data sharing or in if they don't mind researchers seeing it all. Personally I don't mind Google or similar seeing my not very interesting data.
- k-mcgrady 9y ago
  With patient consent I don't see why there would be an issue (although patients would need to be well informed - T&C's like we have for websites on health information would be terrible and abused). I'd say it should be opt-in though.
- chopin 9y ago
  Imho there is no such thing as anonymized health care data. If the data is meaningful each dataset contains enough bits of information to de-anoymize the data when combined with other data sets. This makes Google especially dangerous as they have already much or all of the data required for de-anonymization. Patient consent would make the data much less meaningful as it would remove datasets in a non-random way (better educated people might more likely opt-out). So that's no good solution either. I had recently a doctors visit and was asked exactly that. I opted out as I have no control over the data when released.
matz1 9y ago
Sure, if that what you believe you should fight for it just like other people who think that using personal information for advancement of science is ok will fight for it.
AndrewKemendo 9y ago
You also have the right to not get yourself vaccinated, but is that best for society? The reality is, the more data we have on people the more we can help people make better decisions across their lives. If aggregate medical data identifies a way to save lives or help curb waste/reduce C02 emissions etc... then we should be doing that.

rubatuga 9y ago

Why are you glad that Google got access to illegal data? Why do things like patient confidentiality and privacy exist? It’s not like google should be immune to punishment, and it is completely unethical what the NHS and google have done, especially to the tune of a few millions violations. I’m surprised that because you had a hard time collecting patient data and that you think that medical progress is too slow, you believe illegal methods of collection are justified.

beisner 9y ago
There are a large contingent of people who have more faith in Google to be more ethical than most government organizations, the NHS included. As someone who has been party to the internals at Google, and to some lesser extent with government health organizations, I am truly not sure which side I fall on these days. So I can understand why someone would be okay with Google acquiring the data.
- Symbiote 9y ago
  The proportion of people who trust Google more than the NHS/government is much lower in the UK compared to the USA.
peoplewindow 9y ago
It's not quite so black and white. DeepMind didn't know what they were doing was illegal. It took the ICO a year to make a decision and they set the punishment to zero, so apparently they didn't really know either. It still isn't obvious even in retrospect - the NHS itself agreed to the data transfer, and they were the owners of the data, so presumably it was the NHS that broke the law rather than Google. With respect to patient confidentiality, don't blow it out of proportion. The NHS does not have strong controls on patient data. Breaches are common: http://www.dailymail.co.uk/news/article-2833960/NHS-data-snooped-six-times-day-Staff-caught-looking-records-friends-family-love-rivals.html http://www.dailymail.co.uk/news/article-2833960/NHS-data-sno... The FOI data discussed there is of course a minimum. Real breach levels are surely far higher given that records are mostly still stored on paper (no real way to know how many people see it). The NHS could protect data much more strongly than it does, but it chooses to invest its time and money elsewhere, which is probably the right decision. Finally, leaks of patient data don't kill people, but absence of life-saving drugs that could have been developed via better data do. It's easy to argue that the default should be to make large-scale datasets available to drug and tech firms. The cost/benefit ratio seems extremely positive.

blub 9y ago

Such information should be difficult to access due to the grave consequences of its misuse. And of course greedy insurance companies, advertisers and employers would be more than happy to misuse it, if it means making more money. Perhaps you'd like to have chat with the people on that ethics board, you might learn a thing or two. The medical science can move forward without disregarding people's rights.

deleted 9y ago

[deleted]

whatshisface 9y ago

All they'd have to do is ask. I'd say no, but all they had to do was ask.

pasbesoin 9y ago

I would be comfortable sharing my data (for the greater good) if I had a ironclad guarantee -- that I could believe -- that it wouldn't be used against me. The U.S. is nowhere near that. So, no data for collective you -- except when you rip it from my fear-clenched hands, regardless. Think I'm speaking in the abstract? In my 20's -- a few decades ago -- I had to purchase individual insurance. I had one -- one -- appointment with a psychologist in the prior two years of medical history then requested. A "touchbase" from some childhood counseling. Fortunately, a friend of a friend was able to "unofficially" run my insurance application by the underwriting team. If it had been "officially" processed, the result would have ended up in a shared database of application results. (Yes, the insurance companies in the U.S. have long shared their underwriting decisions with each other -- surprise!) The word back on my application: Denied! Why? (Again, I had an inside track on the process not normally available to the applicant.) Because of that one -- one -- counseling visit, in isolation and with no attendant diagnosis. I learned my lesson. I will never share such data, that can be used against me, without ironclad assurances. And, as the past couple of decades' experience, both direct and learning by reading and observing the news and other cases, have taught me, such assurance is pretty much impossible to achieve -- even commitments made in law are taken back as soon as power shifts. The one hope for this changing that I see? Universal health care coverage. Because then, at a societal level, you are covered regardless. Your individual history no longer plays a role in whether you are covered. I hope that the logical, scientific side of medical science starts to see things this way: That the future, expansion, and greater facility and efficacy of their work, depends on it.

xiphias 9y ago

Patients (all of us) should be able to control the information and get health data in return. I'd love to just get an email with all my records and a link to a Google health app where I can get to know everything about my health that can ve inferred