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

act.wemove.eu

171–180 of 231 posts

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

#171

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 used to have the same philosophy having also spent hundreds of hours dealing with the bureaucracy both technical and human of HIPAA and the need to have more data to improve health outcomes for people.

I then went through the process of applying for disability insurance and dealt with the quagmire of them wanting access to all of my mental health records. Not a summary of my mental health diagnoses, but ALL of the individual progress notes. I refused them having those records and ended up having to waive any disability coverage due to mental health issues I was facing. That type of data I just didn't trust this insurance company to keep the data safe, especially as the paperwork stated they would share the data with all of their affiliates and partners with no recourse on my part to restrict what was shared. At that point, I realized that there are VERY good reasons why we don't just allow all of our medical data to be open.

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

#172

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…

Doctors almost never act with full information. Doctors don't even want full information. It wastes their time. If you come to a new doctor they will make you fill out a stack of forms where you inaccurately self-report your medical history and then they will toss that in the rubbish bin. If you so much as dare to suggest that a doctor should transfer your old medical records from one place to another, they will vehemently object and question why you would want to do such a thing. In fact it is far easier to sign a release of medical records and authorize their release, than it is to cajole any given Records Department into accepting the transfer of records in any format, much less a machine-readable format that would be useful.

I believe it is a liability for doctors to know a true medical history, and anything not already being treated can be ignored and re-diagnosed later, which of course is an ideal situation for the insurance and the new provider, because you can charge all over again for those diagnostics.

Case in point, I had two EKGs performed on me, one in urgent care and one in the hospital. It was not too long before I was going in for surgery, and a prerequisite was a "12-lead EKG" readout, so naturally the hospital tried to force me to undergo a new one at enormous cost and inconvenience, and I balked, because I already had two perfectly good readouts in hand. They eventually relented, but it was incredibly difficult for them to admit that the test results were valid and acceptable, and this is all part of the scam, to charge as many times as possible for anything that wasn't performed here and now by us.

Likewise with psychiatry and therapists; I've been through multiple clinics and dozens of counselors, and of course each one produces a mountain of case notes. So I always offer and suggest that I sign a release and have all the prior case notes transferred over so that they get to know me better. The answer is always "no". They want to know nothing beyond what is in the intake forms, that they will spend 5 minutes reading. Then we will start my therapy over from Square One with a stranger and I get to recount all my feelings and life experiences over and over and over again, on my dime.

Nevertheless, it is still of the utmost importance that you continually sign authorizations for release and that you requisition all available records from all your providers. Authorize all providers to release information to your friends and family. They will hang up the phone if there is no release on file. Renew those authorizations on time, every time; your provider will not remind you. Release all records to yourself on a regular basis, especially after a hospitalization or major incident. You will want good records, just for your own examination, and also if there is ever a dispute or litigation about something, your attorney will appreciate those records too.

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

#173
This is actually a bigger problem in the UK (no longer in the EU).

NHS England has been trying repeatedly to make huge amounts of NHS data available to various kinds of commercial "partners". It started with supplying the Society Of Actuaries with the records of a million patients. For £3,000! Actuaries, of course, are primarily employed by insurance companies - not the kind of people I want having access to my medical data.

We were given the chance to opt out; you had to get and complete the official form from your GP, and go to the clinic and hand it in. But it turned out that only covered your GP's records; hospital records were subject to a different opt-out. You had to ask for a form from your local Health Trust, complete that, and mail it in. None of this was electronic or online.

Then there was a new plan, all your old opt-outs were obsoleted, and you had to go through the whole rigmarole again.

The UK has the finest collection of medical data in the world; a population of 70 million, and a consolidated health service dating back 80 years. No other country has this. I have no problem with that data being used by the NHS to improve existing treatments and develop new treatments. But handing it over for peanuts to J. Arthur Random really isn't on.

There are evidently civil servants in NHS England who are fanatical about sharing NHS data for commercial profit, even if that profit doesn't accrue to the NHS.

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

#174

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…

> many things doctors need to be aware of to diagnose conditions have significant social stigma some are illegal - think threating drug overdose

Nowadays, seeking abortion/family planning could -literally- result in being jailed, and forced to give birth.

Mental health is a big deal. For better or for worse, if your employer/licensing org is aware of any mental health issues, then they could adjust how they treat you.

Crappy bosses could use your history as a way to discredit or manipulate you. That's exactly what the CIA does, whenever someone blows a whistle on them.

Some medical conditions can be interpreted by different people, in intensely negative ways. For example, at one time, being left-handed, meant that you were possessed by the devil.

Often sexual orientation/behavior is a part of your medical history.

But I'm suuuuure that no one would ever use this information in a questionable way.

Look at the "mug shot protection racket" sites. These sites leverage personal information that has been made public, as a way to force you to pay them to remove it (and then immediately republish it in another venue).

I guarantee that a number of folks on this very site, run those sites, and sincerely believe there's nothing wrong with it.

No. Just because "I have nothing to hide," does not mean that I get to force others to divulge intensely personal stuff.

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

#175
post #35

Earlier quoted context omitted.

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…

Whenever I used medical services in the past and filled a form with a question if my data "could be used for research in anonymous form" I answered: Yeah, sure!

Thanks to the likes of Facebook, Google and their ilk starting to stick their filthy paws into the most private medical data some years ago my answer now is always a resounding HELL, NO!

I always feel bad about it, because it really shouldn't be that way, but thanks to the slimy shenanigans of the tech brothership I just don't see a viable alternative to that answer.

What bugs me is my urge to explain to the poor admin to who I'm handing the form the why this is out of the question.

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

#176

Earlier quoted context omitted.

Oh sure, but you know, I also probably benefited a little bit from the Tuskegee Syphilis experiments, and heck, if nuclear war ever comes, the things learned from keeping Hisashi Ouchi alive after his radiation expose, will probably help too. Doesn't make them any less fucking wrong.

> the Tuskegee Syphilis experiments The primary issue with this was the lack of ethical research, not the privacy of medical records. In fact the opposite argument could be made, with a more open and connected system, we could likely glean such information without the trial in the first place.

Using medical records without direct informed consent is unethical, so the there's not nearly the distinction you're trying to make there.

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

#177
post #105

Earlier quoted context omitted.

There are already real bias actualized on the name and gender of the applicant at the very first stage of company hiring. Late stage investigations credit reports, public court records, online social profiles can happen but rarely do. Companies focus on referrals and confirmed job history. I can't imagine more invasive investigations into health history. Secondly why are companies paying more for healthcare given a e…

> I can't imagine more invasive investigations into health history. The point is they wouldn't be 'invasive'. Plug a name into a website, get a cost breakdown of how much health insurance would cost for that employee. Indeed will probably have that feature ready to go the day after it becomes legal/available. A few minutes of work for a relatively low-paid employee processing applications, or these days probably some…

> Indeed will probably have that feature ready to go the day after it becomes legal/available.

Conversely, it would be easy to make that kind of thing illegal, while concomitantly more open records access would reduce healthcare costs.

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

#178
post #120
post #56

Earlier quoted context omitted.

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…

> How does someone weaponize your information Show baby diapers ads because Google knows I'm pregnant. Increase the price of baby furnitures because Amazon knows I'm pregnant. Decline a job interview because LinkedIn knows I'm alcoholic. Tell me what parties I might be interested in because Facebook knows I have cancer. Refuse a ride because Uber knows I'm not vaccinated. None of this situations is far fetched, and n…

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

#179
post #56

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…

> How does someone weaponize your information?

I guess you're not an alcoholic? That's information that potential employers would be glad to pay for. In the days of paper records, doctors would write "C2H4OH" on your record, as a semi-coded message to other doctors.

Estimates vary, but I understand that close to 25% of the UK population is alcohol-dependent to some degree. Deterring people from seeking treatment seems "unhelpful" from the POV of general social benefit.

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

#180
post #120
post #56

Earlier quoted context omitted.

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…

> How does someone weaponize your information Show baby diapers ads because Google knows I'm pregnant. Increase the price of baby furnitures because Amazon knows I'm pregnant. Decline a job interview because LinkedIn knows I'm alcoholic. Tell me what parties I might be interested in because Facebook knows I have cancer. Refuse a ride because Uber knows I'm not vaccinated. None of this situations is far fetched, and n…

> Refuse a ride because Uber knows I'm not vaccinated.

> None of this situations is far fetched, and none of those situations is something positive.

Not only is that type of a situation not far fetched, it was the reality throughout Canada as recently as 2021 and 2022.

"Also effective October 30, travellers departing from Canadian airports, and travellers on VIA Rail and Rocky Mountaineer trains, will be required to be fully vaccinated in order to travel."

https://www.canada.ca/en/transport-canada/news/2021/10/manda...

Given Canada's large geographic area, access to domestic air and rail travel is extremely important.

That type of unjustifiable discrimination also applied to other services/venues/events, too, such as restaurants.

What's even more nonsensical is how those policies remained in place even when it was blatantly obvious that the so-called "vaccines" involved didn't seem to prevent infection and didn't seem to prevent transmission, even among the so-called "fully vaccinated".

The very negative social and economic consequences of those awful policies far outweighed the non-existent "benefits".

If some good did come out of this, it's that at least a larger segment of the Canadian population realizes the importance of privacy, especially of medical records.

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