7 ms·

> HIPAA is a massive burden on medical and research organizations of all sizes That is the point. It is supposed to be burdensome. It is supposed to be difficu

> HIPAA is a massive burden on medical and research organizations of all sizes That is the point. It is supposed to be burdensome. It is supposed to be difficult and cumbersome to do anything with anybody's medical data. I don't want to dismiss your comment entirely, because I understand the frustration around the good that the data could do but in the wrong hands it could be truly disasterous. I do not want Meta or Google anywhere near my medical data (and they're already pretty close in a lot of ways). I do not want my medical information used to enrich shareholders and that is the first thing that will happen; not improved research. It should be easier for people to opt-in to sharing their medical data with a wide range of organisations if they choose but right now they never get a choice. It's either "we're making a law so we can give this data away" or not. > the upside is just so much larger than the harms I also don't agree with this as a blanket statement. For many people, including women in the US as you pointed out (amongst many other groups), the harms are criminalisation and imprisonment. The harm here, for the individual, far outweighs any potential benefit.

kkaske 3y ago
I know that you probably meant Google (the search engine), but Google (the company) is already in your medical data: https://cloud.google.com/healthcare https://cloud.google.com/healthcare
- maxehmookau 3y ago
  No, I meant the company. I'm in the UK and if it transpired that Google (the company) had routine access to NHS medical data, I'd be very upset and complaining to the information commissioners office.
  - scarby2 3y ago
    interestingly health data is a huge problem in the UK. In that the NHS trusts have extremely valuable information on a population wide basis and do next to nothing with it. Does google/a private company have to do it? No, but at a minimum the UK govt needs to make significantly better use of this data for research purposes. a 100x increase in medical research spending and a new more agile public medical research body would probably be enough
    - maxehmookau 3y ago
      Sure, that's fine. The UK govt has proven that when it tries, it can do digital services _pretty well_. The concern here isn't the government using the data for the betterment of society, it's the government handing over health data wholesale to companies whose sole purpose is to generate profit by exploiting data. Ask for consent. If I say you can't use my medical data, then you can't use it. If I say you can, then you can. It's really very simple.
- JohnFen 3y ago
  > Google (the company) is already in your medical data This is one of the many things that lead me to consider Google to be a harmful and reprehensible company.
michaelmior 3y ago
> It should be easier for people to opt-in to sharing their medical data This seems like a good compromise moving forward. Add a section on whatever HIPAA forms you already need to sign that gives you the chance to opt in to use of anonymized data for medical research purposes. I think for this to work, the law would need to clearly define how records must be anonymized, and provide penalties both for poor anonymization and for not clearly communicating to patients that this sharing is optional.
- maxehmookau 3y ago
  Yep. I'm all for a better version of informed consent. "Can we provide your medical details in full to the following organisations?" "Can we provide an anonymised version of your record to them?" Yes. No. Abide by those wishes. It's pretty simple. Unfortunately big tech companies see the fines for handling data poorly as a cost of doing business, and not the punishment it was designed as. Until that changes, the status quo can't change.

kkaske 3y ago

I know that you probably meant Google (the search engine), but Google (the company) is already in your medical data: https://cloud.google.com/healthcare https://cloud.google.com/healthcare

maxehmookau 3y ago
No, I meant the company. I'm in the UK and if it transpired that Google (the company) had routine access to NHS medical data, I'd be very upset and complaining to the information commissioners office.
- scarby2 3y ago
  interestingly health data is a huge problem in the UK. In that the NHS trusts have extremely valuable information on a population wide basis and do next to nothing with it. Does google/a private company have to do it? No, but at a minimum the UK govt needs to make significantly better use of this data for research purposes. a 100x increase in medical research spending and a new more agile public medical research body would probably be enough
  - maxehmookau 3y ago
    Sure, that's fine. The UK govt has proven that when it tries, it can do digital services _pretty well_. The concern here isn't the government using the data for the betterment of society, it's the government handing over health data wholesale to companies whose sole purpose is to generate profit by exploiting data. Ask for consent. If I say you can't use my medical data, then you can't use it. If I say you can, then you can. It's really very simple.
JohnFen 3y ago
> Google (the company) is already in your medical data This is one of the many things that lead me to consider Google to be a harmful and reprehensible company.

michaelmior 3y ago

> It should be easier for people to opt-in to sharing their medical data This seems like a good compromise moving forward. Add a section on whatever HIPAA forms you already need to sign that gives you the chance to opt in to use of anonymized data for medical research purposes. I think for this to work, the law would need to clearly define how records must be anonymized, and provide penalties both for poor anonymization and for not clearly communicating to patients that this sharing is optional.

maxehmookau 3y ago
Yep. I'm all for a better version of informed consent. "Can we provide your medical details in full to the following organisations?" "Can we provide an anonymised version of your record to them?" Yes. No. Abide by those wishes. It's pretty simple. Unfortunately big tech companies see the fines for handling data poorly as a cost of doing business, and not the punishment it was designed as. Until that changes, the status quo can't change.