6 ms·

I gotta say, I wonder at what the balance of any discoveries will actually be. I am not a doctor, but I wonder if Machine Learning will identify anything other

I gotta say, I wonder at what the balance of any discoveries will actually be. I am not a doctor, but I wonder if Machine Learning will identify anything other than geographic clusters of patients? I suppose that it is possible that this kind of info could help in diagnosis, but, machine learning seems unlikely to result in cures given the lack of any actual trials. Of course, improved incidence data might truly help earmark funds for research. personally, I hope that my data could help people. I am not so concerned with my privacy that I would withhold my medical records if they could help. But, in exchange for that contribution I do want protection against misuse of that data by my insurers or other institutions. I recognize it isn't possible for me to enforce that use in any other way than withholding my data entirely. The reality is that we cannot, as a society, afford to have no trust in our institutions. We need instead to focus on providing oversight and guidance of them such that they can actively contribute to the public good. Private contributions to institutions is mandatory for the public to succeed. maintaining that trust is the responsibilities of those institutions and they should seek whatever audits and oversights they can to keep that trust and fulfill their charters.

disabled 7y ago
Dude, it is not a "contribution", it is a black-box partnership. I will give up my data for "research" as long as I am 100% certain that my medical information will not be abused in a way that can harm me or others. Until code is routinely audited and conforms to a strict code of ethics, you can count me out. If you think it is "unfair", consider my position: I have a rare disease that has case reports and (small) cohorts at best in the literature. Publications on it are sparse. Since I can be re-identified with literally zero effort, due to a lack of ethics of the STEM community, I have a target on my back. I want to stay alive, and not be targeted by insurance companies and/or the medical-industrial complex. Sorry, but if people want to benefit from me, then don't force unethical experimentation on me and others via big data and the wide sharing of that data.
- noir_lord 7y ago
  Same boat, same reasons. I opted out of EHCR here (apparently I was one of the very few who did from a conversation with my GP receptionist) because I simply don't trust "It'll save us money" as a reason (I also don't trust my gov to be competent).
  - deleted 7y ago
    [deleted]
- amelius 7y ago
  Can't we have better separation of interests? E.g. Google provides hardware and software. Mayo clinic runs the hardware and software, while Google sees none of the data?
  - adamredwoods 7y ago
    I think this is Google's attempt to break into EHR, where Epic Systems is a leader, but has years more experience in maintaining confidential information. But you're right, Google is a marketing, search, and advertising GIANT. Even if they stay HIPAA compliant, I would want to see more deliberate separation of interest.
- landryraccoon 7y ago
  I’m curious, are you worried that if everyone in your position doesn’t share data there will never be research on your condition and therefore no cures or better treatments? I worry that one tradeoff of more privacy and less trust is that researchers won’t get the information they need to produce cures and treatments. It’s a faustian bargain that people who are sick have to either risk having their information leak, or risk science ignoring their condition entirely.
  - TeMPOraL 7y ago
    > I’m curious, are you worried that if everyone in your position doesn’t share data there will never be research on your condition and therefore no cures or better treatments? You have data sharers to blame for that. They're the ones that are destroying possible cooperation (everyone with that condition sharing data). > It’s a faustian bargain that people who are sick have to either risk having their information leak, or risk science ignoring their condition entirely. Indeed, and I think the way to solve it is to go after the leakers and the sharers and the "entrepreneurs". If I give my data for medical research, I mean bona fide research, as in scientists and labs and tax-funded scientific papers, and not "research" into lowering operational costs by selling data, or "research" done by startups partnering with the clinic.
en-us 7y ago
ML won't be used to find cures, but to diagnose and classify disease. For example, CNN features could be applied to medical imaging to learn to detect various diseases, and that algorithm could replace the "quick read" that physicians order when the Radiologist isn't available to do a full read. Another possible use would be to identify septic or nearly septic patients and alert a clinician to intervene.

disabled 7y ago

Dude, it is not a "contribution", it is a black-box partnership. I will give up my data for "research" as long as I am 100% certain that my medical information will not be abused in a way that can harm me or others. Until code is routinely audited and conforms to a strict code of ethics, you can count me out. If you think it is "unfair", consider my position: I have a rare disease that has case reports and (small) cohorts at best in the literature. Publications on it are sparse. Since I can be re-identified with literally zero effort, due to a lack of ethics of the STEM community, I have a target on my back. I want to stay alive, and not be targeted by insurance companies and/or the medical-industrial complex. Sorry, but if people want to benefit from me, then don't force unethical experimentation on me and others via big data and the wide sharing of that data.

noir_lord 7y ago
Same boat, same reasons. I opted out of EHCR here (apparently I was one of the very few who did from a conversation with my GP receptionist) because I simply don't trust "It'll save us money" as a reason (I also don't trust my gov to be competent).
- deleted 7y ago
  [deleted]
amelius 7y ago
Can't we have better separation of interests? E.g. Google provides hardware and software. Mayo clinic runs the hardware and software, while Google sees none of the data?
- adamredwoods 7y ago
  I think this is Google's attempt to break into EHR, where Epic Systems is a leader, but has years more experience in maintaining confidential information. But you're right, Google is a marketing, search, and advertising GIANT. Even if they stay HIPAA compliant, I would want to see more deliberate separation of interest.
landryraccoon 7y ago
I’m curious, are you worried that if everyone in your position doesn’t share data there will never be research on your condition and therefore no cures or better treatments? I worry that one tradeoff of more privacy and less trust is that researchers won’t get the information they need to produce cures and treatments. It’s a faustian bargain that people who are sick have to either risk having their information leak, or risk science ignoring their condition entirely.
- TeMPOraL 7y ago
  > I’m curious, are you worried that if everyone in your position doesn’t share data there will never be research on your condition and therefore no cures or better treatments? You have data sharers to blame for that. They're the ones that are destroying possible cooperation (everyone with that condition sharing data). > It’s a faustian bargain that people who are sick have to either risk having their information leak, or risk science ignoring their condition entirely. Indeed, and I think the way to solve it is to go after the leakers and the sharers and the "entrepreneurs". If I give my data for medical research, I mean bona fide research, as in scientists and labs and tax-funded scientific papers, and not "research" into lowering operational costs by selling data, or "research" done by startups partnering with the clinic.

en-us 7y ago

ML won't be used to find cures, but to diagnose and classify disease. For example, CNN features could be applied to medical imaging to learn to detect various diseases, and that algorithm could replace the "quick read" that physicians order when the Radiologist isn't available to do a full read. Another possible use would be to identify septic or nearly septic patients and alert a clinician to intervene.