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Do no harm petition: Don't give big tech access to our medical records

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Re: Do no harm petition: Don't give big tech access to our medical records

#31

Post by maxehmookau »

iandanforth wrote: post #13

I strongly oppose this kind of law. HIPAA is a massive burden on medical and research organizations of all sizes, I've personally spent hundreds of hours navigating both human and technical bureaucracy related to HIPAA and I wouldn't wish that on my worst enemy. Ultimately however the worst part of these laws is that they are so harmful to research in the long run. With easy and ready access to medical data we could…

> 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.

Re: Do no harm petition: Don't give big tech access to our medical records

#32

Post by tengbretson »

hankchinaski wrote: post #25

As long as PII is not attached to medical metadata I really don’t understand the pettiness of these laws

When combined with the data the big tech companies already have access to there is no such thing as anonymous medical data.

Re: Do no harm petition: Don't give big tech access to our medical records

#33

Post by freeone3000 »

iandanforth wrote: post #13

I strongly oppose this kind of law. HIPAA is a massive burden on medical and research organizations of all sizes, I've personally spent hundreds of hours navigating both human and technical bureaucracy related to HIPAA and I wouldn't wish that on my worst enemy. Ultimately however the worst part of these laws is that they are so harmful to research in the long run. With easy and ready access to medical data we could…

Doctor-patient confidentiality is important so that the doctor can act in your best interest (yes, yes, very funny) with full information. Very many things doctors need to be aware of to diagnose conditions have significant social stigma. Examples include alcoholism, mental disorders, substance abuse, genital status, sexual status, pregnancy status, the list goes on. The average person is reluctant to share this information to begin with, with good reason, as it goes into a permanent record. If such a record were public…

No, even for longitudinal studies, even with “anonymized” data, the risk is too great for any individual, and to society in general. Ideopathic and non-causal diseases should have some buy-in from patients; a standard waiver might be useful for research use of data. (I’ve signed one.) But in general, no, the restrictions are worth it.

Re: Do no harm petition: Don't give big tech access to our medical records

#34

Post by masfuerte »

hankchinaski wrote: post #25

As long as PII is not attached to medical metadata I really don’t understand the pettiness of these laws

For the medical data (not metadata) to be useful in models you usually need plenty of associated PII like dob, postcode area, etc. Overfit a model and it will act pretty much as a database lookup on your personal medical data. It needs to be regulated.

Re: Do no harm petition: Don't give big tech access to our medical records

#35

Post by JohnFen »

iandanforth wrote: post #13

I strongly oppose this kind of law. HIPAA is a massive burden on medical and research organizations of all sizes, I've personally spent hundreds of hours navigating both human and technical bureaucracy related to HIPAA and I wouldn't wish that on my worst enemy. Ultimately however the worst part of these laws is that they are so harmful to research in the long run. With easy and ready access to medical data we could…

I understand your perspective, and respectfully disagree. The reason HIPAA exists is because of a long history of the abuse of people's medical records. Companies should not have access to my records without my explicit informed consent. They have shown time and time again that they can't be trusted with sensitive data. That's at least equally true for tech companies.

Re: Do no harm petition: Don't give big tech access to our medical records

#36

Post by kkaske »

maxehmookau wrote: post #31
iandanforth wrote: post #13

I strongly oppose this kind of law. HIPAA is a massive burden on medical and research organizations of all sizes, I've personally spent hundreds of hours navigating both human and technical bureaucracy related to HIPAA and I wouldn't wish that on my worst enemy. Ultimately however the worst part of these laws is that they are so harmful to research in the long run. With easy and ready access to medical data we could…

> 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…

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

Re: Do no harm petition: Don't give big tech access to our medical records

#37

Post by iandanforth »

freeone3000 wrote: post #33
iandanforth wrote: post #13

I strongly oppose this kind of law. HIPAA is a massive burden on medical and research organizations of all sizes, I've personally spent hundreds of hours navigating both human and technical bureaucracy related to HIPAA and I wouldn't wish that on my worst enemy. Ultimately however the worst part of these laws is that they are so harmful to research in the long run. With easy and ready access to medical data we could…

Doctor-patient confidentiality is important so that the doctor can act in your best interest (yes, yes, very funny) with full information. Very many things doctors need to be aware of to diagnose conditions have significant social stigma. Examples include alcoholism, mental disorders, substance abuse, genital status, sexual status, pregnancy status, the list goes on. The average person is reluctant to share this info…

[flagged]

Re: Do no harm petition: Don't give big tech access to our medical records

#38

Post by photochemsyn »

People are saying that open access to everyone's medical records would speed up research, but that's not how well-controlled and well-designed medical research works in practice. For example, if you wanted to study lung cancer causes and treatment efficacy, just mining public data would not be that beneficial. Real studies need controls, detailed patient histories, actual observational lab work (blood tests, etc.), and so on.

What this data would be used in practice? Insurance corporations would use it to identify people at greater risk of diseases and to deny them coverage (or make it difficult to obtain coverage, remove them from coverage, etc.) in order to increase their profit margins.

Now, you could have useful anonymized public databases, for example, imagine if everyone got regular monitoriing of body burden of heavy metals and industrial and agricultural organic chemicals, and that was cross-referenced to their incidence of cancer, liver disease, etc. This could reveal common associations between specific pollutants and various diseases that could then be studied in more detail. Similarly, this could be applied to pharmaceutical products (which sometimes do more harm than good to their users)

Of course, that kind of public health-centric database would open up corporations to liability and cause profit loss, which is why such body-burden assessments of pollutants are not part of your normal medical checkup.

Re: Do no harm petition: Don't give big tech access to our medical records

#39

Post by maxehmookau »

kkaske wrote: post #36
maxehmookau wrote: post #31

Earlier quoted context omitted.

> 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…

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

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.

Re: Do no harm petition: Don't give big tech access to our medical records

#40

Post by LatteLazy »

forkerenok wrote: post #29

The article doesn't mention whether those are anonymised records. A PDF from the references expands on that: > Pseudonymisation and anonymisation are not enough: health data is so specific that re-identification can be trivial. Often a person’s social media or financial history, both widely available on today’s data markets, is sufficient to identify medical events that can easily lead to reidentifying supposedly pse…

You cannot really anonymised records like these. You can identify most people from only their post code, gender and date of birth (using just public data sources). So stripping names out is meaningless...
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