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Because all health software companies collect this stuff. Worse, they play health providers off each other and bully them where if the small provider doesn't ac

Because all health software companies collect this stuff. Worse, they play health providers off each other and bully them where if the small provider doesn't acquiesce to the software company selling their patient data, they get cut out of the care network. It's egregious. There is a situation in Canada happening with one vendor in particular, and they have the support of doctors (who often hate privacy because it's a limit on their discretion, and it creates expensive bureaucracy to manage because everyone involved also hates limits to their discretion), but all the other small care providers who make up the bulk of health care services are basically principled people in small settings who want to help their patients. I've seen how they get bullied, and I don't really know what the solution is. Basically if you value privacy, don't get sick.

incone123 4y ago
Can you explain what you mean about privacy being a limit on the doctor's discretion? I want my doctor to have all my medical information available for making decisions about my treatment. I don't want them to share my information beyond what is necessary for that care (and inevitably for billing/insurance too)
- motohagiography 4y ago
  Privacy laws limit the ability to share PHI to very specific purposes and contexts, with named people. For someone to get access to your PHI, they need to get your consent first, this is either explicit with a signature, or "implied" through a variety of purposes, particularly for health system billing and improvement. There are lots of government departments that want to use health information for everything from identity cards to licensing, to general "social science" research, and they are prevented from looking up whether you've had an abortion or not because these rules are in place. They'd really like to do those things, but they can't. A doctor can't just share your husbands last STD test date, or your wife's fertility status with you, even if they have the information. They also can't lookup their own partners information without it creating logs and regulatory questions about their conduct. I've heard dozens of stories of nurses saying, "We can't use your previous test results because they are protected by privacy so I have to take the sample again," with an eye roll. Generally, they resent having to get patient or substitute decision maker permission. It means they can't just txt a photo of your file with their android phone because it's convenient, and they need your permission and informed consent to use it. I get the "I save babies, do you want dead babies or do you want your so-called privacy you selfish prick?" argument, but they were doing that before the internet, and a society where a class of people can abuse your health information and use it to harm you is a bigger problem than charitably a tiny 4th derivative change in the trajectory of infant mortality. General health research purposes have not been allowed previously, though there were some recent post-pandemic changes that enabled sharing of all health records with unspecified researchers, but privacy laws have typically got in the way of aggregating patient data or sharing it with peers and specialists without getting a patient signature etc. I've sat on calls with academics who were openly derisive of individual privacy because they thought that using peoples health records to train machine learning systems was their annointed right. I don't have a lot of short answers. I've spent almost two decades on the specific issues related to health information privacy, and healthcare provision in many ways is social governance by other means, so there aren't a lot of short answers.

incone123 4y ago

Can you explain what you mean about privacy being a limit on the doctor's discretion? I want my doctor to have all my medical information available for making decisions about my treatment. I don't want them to share my information beyond what is necessary for that care (and inevitably for billing/insurance too)

motohagiography 4y ago
Privacy laws limit the ability to share PHI to very specific purposes and contexts, with named people. For someone to get access to your PHI, they need to get your consent first, this is either explicit with a signature, or "implied" through a variety of purposes, particularly for health system billing and improvement. There are lots of government departments that want to use health information for everything from identity cards to licensing, to general "social science" research, and they are prevented from looking up whether you've had an abortion or not because these rules are in place. They'd really like to do those things, but they can't. A doctor can't just share your husbands last STD test date, or your wife's fertility status with you, even if they have the information. They also can't lookup their own partners information without it creating logs and regulatory questions about their conduct. I've heard dozens of stories of nurses saying, "We can't use your previous test results because they are protected by privacy so I have to take the sample again," with an eye roll. Generally, they resent having to get patient or substitute decision maker permission. It means they can't just txt a photo of your file with their android phone because it's convenient, and they need your permission and informed consent to use it. I get the "I save babies, do you want dead babies or do you want your so-called privacy you selfish prick?" argument, but they were doing that before the internet, and a society where a class of people can abuse your health information and use it to harm you is a bigger problem than charitably a tiny 4th derivative change in the trajectory of infant mortality. General health research purposes have not been allowed previously, though there were some recent post-pandemic changes that enabled sharing of all health records with unspecified researchers, but privacy laws have typically got in the way of aggregating patient data or sharing it with peers and specialists without getting a patient signature etc. I've sat on calls with academics who were openly derisive of individual privacy because they thought that using peoples health records to train machine learning systems was their annointed right. I don't have a lot of short answers. I've spent almost two decades on the specific issues related to health information privacy, and healthcare provision in many ways is social governance by other means, so there aren't a lot of short answers.