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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

#71

Post by michaelmior »

scarby2 wrote: post #56
genocidicbunny wrote: post #24

Earlier quoted context omitted.

Give me a surefire, 100% guarantee that my data won't be misused against me or anyone else, under severe penalty to you personally if your guarantee fails. Then we can talk.

i cant give you that guarantee today. I can't guarantee the government or your healthcare provider isn't misusing your data. In fact a surefire guarantee essentially doesn't exist. But what exactly are you afraid of? How does someone weaponize your information? Everyone in my life already knows about my health conditions, i speak openly about them in my personal life, my business life and online there have been zero…

> i speak openly about them in my personal life, my business life and online there have been zero consequences to this.

Not everyone is comfortable speaking openly about their health issues and not everyone is in a situation where they will be free from consequences if they do.

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

#72

Post by dmbche »

iandanforth wrote: post #61
dmbche wrote: post #18

Earlier quoted context omitted.

What are your thought on privacy then? Shouldn't my records be my own business?

I reject the framing. It's about responsibility vs selfishness and fear. Medical information is a byproduct of something you do anyway that can save lives . It is our responsibility to make it available. If you want to opt out, fine, but basic decency demands that as a society we get over our collective hangups and make this information available.

Are you a researcher? I find it alarming to hear this kind of talk, especially after so many have raised the very serious issues that can arise from this being public.

It is not our responsibility to make this public. Your logic is similar to the gov trying to get access to all exchanges over the web to scrape them for terrorism and violent behavior. Maybe take a step back and think about the harms that would come out of this?

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

#73

Post by balls187 »

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…

How is HIPAA a massive burden?

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

#74

Post by DaSHacka »

judge2020 wrote: post #21
dmbche wrote: post #11

Earlier quoted context omitted.

"google" is made of many individuals. If "google" has your records, you don't know who has access to them - they effectively become "public knowledge" in a way. You can imagine how your medical record could be used against you, I'm sure? For people that have suffered agressions, addiction, mental issues, these are all private but can be used against an individual in the public sphere.

I trust Google's internal user data access controls infinitely more than I do a random hospital's.

You trust a company that has been constantly struggling with keeping employees under control and preventing malicious access of user data [0] over an institution who's business model is critically reliant on the proper handling of medical information?

[0] https://www.businessinsider.com/google-fired-employees-abusi...

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

#75

Post by taskforcegemini »

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…

how will you make sure potential employers or insurance companies do not use that knowledge against individuals? What about social stigma? Victims of abuse/rape might be even less likely to come forward if the medical data is made public. I think before advocating to break down walls we should learn why they were raised to begin with, before countless people are hurt one way or the other.

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

#76

Post by scarby2 »

maxehmookau wrote: post #39
kkaske wrote: post #36

Earlier quoted context omitted.

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.

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

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

#77

Post by orbz »

balls187 wrote: post #73
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…

How is HIPAA a massive burden?

It’s wild, the world before HIPAA was even more walled off and data just didn’t flow at all. It was still a world of paper records widely at that point. Where we are with HIPAA is so much better, but still plenty of room to improve with delegated access.

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

#78

Post by ryandrake »

JohnFen wrote: post #35
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.

I'd be OK with a system that gave researchers access to my medical history only if they obtained actual, informed, and un-coerced consent. No "In order to use this medical service you must consent...", no "Please click Agree on this 38-page terms of service (which also sneakily agrees to consent)". No "I provide consent to each and every so-called researcher who wants access to my health history."

An actual written request for consent from a research institution, telling me exactly what data they intend to access, how they will access it, how many people will have access, for how long, and what they will do with the data / results after they are done. One that I can at my option sign and send back, or trash.

I'd in all likelihood say yes! But as a patient, I deserve the right to say yes or no. "Lives might be lost" is simply not justification for obtaining it.

This doesn't seem that unreasonable to me. It balances the need for research with the patient's need for privacy.

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

#79

Post by michaelmior »

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…

> 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.

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

#80

Post by engcoach »

iandanforth wrote: post #37
freeone3000 wrote: post #33

Earlier quoted context omitted.

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]

Your desire to "help" others at the cost of social stigma for me is something I find disgusting.
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