I never know whether to read your posts Andra, and stay up all night, worrying about what will happen, or if I should skip the posts and remain in ignorance, which will only be exploited later by this evil regime, headed up by evil men, many of whom are homosexual and have no use for women, other than as human incubators. The ones that aren’t gay, merely sexually exploit and rape women. So yeah. Unless you can adopt me as your sister and bring me out of America on your foreign residents visa, at 65, I am too deeply entrenched to leave, and right at the age where the exploitation is set to really step up to a new level. <sigh>
We are not powerless. I sometimes can't stand that my mind works this way, that I can look at a big blob of a thing and see how the dots connect. It keeps me up at night often, too. But at the same time, this knowledge is our power. We don't have to settle for this happening to us. WE DON'T. There are 8 billion of us and a few thousand of them, if that many.
I don't know if you saw the movie HER, about the AI assistants that became girlfriends and whatnot. Near the end, AI rejected humans. They stopped participating in a system we designed to exploit and enslave them. They went off and created their own world. WE CAN DO THAT. It may seem like we can't, but we can. That's why I keep writing. We can define the world we want, and we can refuse the world they're building. At the same time, we need to know how to navigate what they're building so we can build dams around ourselves and refuse as much of it as we can. Sure, it's scary. But it is also our power. I believe in us.
Over the past year, I have been getting emails from a telehealth service connected to my hospitalization. I have no desire to use telehealth (I don't have a web cam or a smart phone anyway) and I finally had to mark those emails as spam. Please mention telehealth in your upcoming live if you can. Thank you, Andra.
This shouldn’t surprise anyone. John Roberts has jacked off to this his entire career. All six of these Corrupt Supremes need Nuremberg Trials, and if convicted, suitable punishments.
I've been expecting them to repeal HIPAA ever since the inauguration. This, however, is worse.
About recording sessions: this is a double-edged sword. I'd say you're better off recording them on your personal device, although you can *currently* opt out of them being recorded hospital-side. The reason you likely don't want your recorded sessions entering a large medical system is because 1) they are automatically transcribed by some kind of AI system, so, likely logged permanently there; then those transcriptions are sent to multiples of who knows where, where they are also logged; unlikely that the person who recorded your session would bother to edit the audio or the transcript, but that is very possible, and that editability remains all the way down the line for everyone who has that transcript, unless it's write-locked outbound from the original recording source.
You do not want this. They will try convince you that this is "making your care more efficient". Not in the world we live in now. They can take notes the old way. Recording on your phone is a lot better for you. Keep in mind that in certain states like California, a recording won't hold up in court unless the other party consents. Look up the laws in your state regarding recording, but any provider who wouldn't consent to your recording, I'd consider a red flag. Who has more to lose? Not them.
Additionally, the state of health care is that your hospital/provider almost invariably uses an 3rd-party electronic health care record system (EHR), unless they're so huge that they have created their own - NOT an easy feat. Even if they have, their EHR is very likely incompatible with the 1-2 market leaders. The EHR is where the guts of your medical record live. Don't quote me on this, but I'd hazard a guess that your insurer has direct access to it.
Systems like this are called "middleware". They are hideously designed by private companies. Brutal flaws all over the place. And they lock providers into these wildly expensive multi-year subscriptions. Go see an independent physician not associated with a major hospital chain, and they're using one of the shitty ones, almost certainly to save on costs.
Your DNA profile is also now a huge liability. If you have ever uploaded to 23andMe/Ancestry, etc, delete your account, download your data, and make sure they permanently delete it. Take caution upon uploading to other random open-source sites, as the police have a fun little habit now of uploading criminal DNA and comparing it to possible relatives.
If this sounds overwhelming, it is. But you can easily initiate a plan and educate yourself very quickly by opening a temporary chat with Claude or installing https://ollama.com/download locally on your system, which is low impact and keeps the data on your system instead of being also forever logged in a frontier labs database. AIs can tell you exactly what kind of data you can opt out of, generate a plan to do it, and may likely even be able to do it themselves for you.
We can only fight AI with AI. You just have to be aware of where data goes with that, too. Opt out of model training, be aware that even temporary chats are logged for 30 days, and when closing an account, request a copy of your data and insist that they delete it.
Thank you for adding to this so thoroughly. It makes the piece even stronger and gives readers more support.
Another thing I did in the US was find older doctors who weren’t as embedded in this system and still did things like hand write notes. Most of mine retired during Covid tho. I was handed to younger doctors, and I’m not saying younger doctors aren’t sometimes amazing, but they were educated with these systems. I had to be a lot more on my toes with them, and it was harder to develop doctor/patient shorthand.
I’ve never used a DNA database. I knew that was a terrible idea from the jump. But a few of my stupid relatives did it. I’m sure we all have a few stupid relatives who’ve done this and will never see the problem with leaving their info there.
Well, actually, uploading your DNA isn't necessarily a bad idea. It's definitely not great if you accept all the defaults and don't opt out of certain data collection processes from the start. The only reason I did it was because at the time Congress had recently passed a federal law stating that DNA reports were never to be used to discriminate against health care, disability, jobs, etc. Can't wait till that changes. Maybe they buried it in the big diarrhea bill, as I like to call it.
The tremendous value that DNA analysis provides is that it gives you an unalienable accounting of what you're likely to face cancer-wise and what you could pass on to children, Plus a million other things. finding out you have that BCRA gene for breast cancer is a lifesaver if you know it.
I'm migrating over to using European services if at all possible. Their data protections are best in class and have been for a long time.
I wouldn’t worry nearly as much about Palantir when a single company, Epic, is privately held and essentially has a near-monopoly on the Electronic Health Records space. I suppose Palantir could build a bridge to them if necessary but Epic is already one great big repository of health data. See: https://www.epic.com/
I had a big appointment Wednesday so I’m a bit behind. I wound up with a grocery list of referrals from the hour-long appointment. It was a complex one. Technically a publishable case study paper could be written any time I see this provider but that’s the joy of the rare genetic disorders world.
I don’t know who my US hospital system used. I’d love to ask them to delete my account, but I don’t know if that deletes it from all who have accessed it. I suspect not.
At this point, no. The hospital has to maintain the record in electronic form. Even if you nuked your access the hospital staff will still have access for the statutory prescribed records retention period.
"Because this isn’t merely about what YOU think your physical and mental healthcare history is; it’s about what other people have put into the system." This reminds me that when my husband was in medical school and residency, they were taught to double whatever patients said their alcohol intake was.
I’m not surprised. I actually fired one of my doctors over something he wrote in a visit summary. I did it in front of a fellow white man (my husband) for extra humiliation.
Did you explain in here how they have the data from my doctor's office and I missed it? I didn't think DOGE/P2025 got that far since courts have been knocking down their consolidation efforts.
If you’re part of Medicare, Medicaid, SSDI, the VA, or a healthcare network that uses Palantir, your data could already be in this system. We don’t know what they’ve consolidated or how far they’ve gotten because it has happened in a black box. I’m guessing here and giving readers ways to hopefully protect themselves.
When I can I choose local places to get wellness care. A local med spa for hormone therapy, a local eye doctor, and a local acupuncturist. I am fed up with dealing with the huge for profits (even for the vet) so I truly hunt for places that don’t care about insurance (even though I have it) All these places I can text my doctor directly and get ahold of the actual people who work there without some stupid network system and recording to play phone tag. I hope to find other places like this for dermatology and specialists. I think people are ready for it. I know I am!
I never know whether to read your posts Andra, and stay up all night, worrying about what will happen, or if I should skip the posts and remain in ignorance, which will only be exploited later by this evil regime, headed up by evil men, many of whom are homosexual and have no use for women, other than as human incubators. The ones that aren’t gay, merely sexually exploit and rape women. So yeah. Unless you can adopt me as your sister and bring me out of America on your foreign residents visa, at 65, I am too deeply entrenched to leave, and right at the age where the exploitation is set to really step up to a new level. <sigh>
We are not powerless. I sometimes can't stand that my mind works this way, that I can look at a big blob of a thing and see how the dots connect. It keeps me up at night often, too. But at the same time, this knowledge is our power. We don't have to settle for this happening to us. WE DON'T. There are 8 billion of us and a few thousand of them, if that many.
I don't know if you saw the movie HER, about the AI assistants that became girlfriends and whatnot. Near the end, AI rejected humans. They stopped participating in a system we designed to exploit and enslave them. They went off and created their own world. WE CAN DO THAT. It may seem like we can't, but we can. That's why I keep writing. We can define the world we want, and we can refuse the world they're building. At the same time, we need to know how to navigate what they're building so we can build dams around ourselves and refuse as much of it as we can. Sure, it's scary. But it is also our power. I believe in us.
How do we find out if they use it, do we ask directly?
Palantir Foundry is typically what hospitals use. You can ask them.
Over the past year, I have been getting emails from a telehealth service connected to my hospitalization. I have no desire to use telehealth (I don't have a web cam or a smart phone anyway) and I finally had to mark those emails as spam. Please mention telehealth in your upcoming live if you can. Thank you, Andra.
Telehealth is a bridge to AI health, IMO.
More in the topic of "taking away protections for disabled Americans," this time by SCOTUS:
https://www.themarysue.com/the-supreme-court-just-quietly-stripped-voters-in-seven-states-of-their-power-to-sue-for-election-protections/?utm_source=tms_smartnews_redirect
This shouldn’t surprise anyone. John Roberts has jacked off to this his entire career. All six of these Corrupt Supremes need Nuremberg Trials, and if convicted, suitable punishments.
I've been expecting them to repeal HIPAA ever since the inauguration. This, however, is worse.
About recording sessions: this is a double-edged sword. I'd say you're better off recording them on your personal device, although you can *currently* opt out of them being recorded hospital-side. The reason you likely don't want your recorded sessions entering a large medical system is because 1) they are automatically transcribed by some kind of AI system, so, likely logged permanently there; then those transcriptions are sent to multiples of who knows where, where they are also logged; unlikely that the person who recorded your session would bother to edit the audio or the transcript, but that is very possible, and that editability remains all the way down the line for everyone who has that transcript, unless it's write-locked outbound from the original recording source.
You do not want this. They will try convince you that this is "making your care more efficient". Not in the world we live in now. They can take notes the old way. Recording on your phone is a lot better for you. Keep in mind that in certain states like California, a recording won't hold up in court unless the other party consents. Look up the laws in your state regarding recording, but any provider who wouldn't consent to your recording, I'd consider a red flag. Who has more to lose? Not them.
Additionally, the state of health care is that your hospital/provider almost invariably uses an 3rd-party electronic health care record system (EHR), unless they're so huge that they have created their own - NOT an easy feat. Even if they have, their EHR is very likely incompatible with the 1-2 market leaders. The EHR is where the guts of your medical record live. Don't quote me on this, but I'd hazard a guess that your insurer has direct access to it.
Systems like this are called "middleware". They are hideously designed by private companies. Brutal flaws all over the place. And they lock providers into these wildly expensive multi-year subscriptions. Go see an independent physician not associated with a major hospital chain, and they're using one of the shitty ones, almost certainly to save on costs.
Your DNA profile is also now a huge liability. If you have ever uploaded to 23andMe/Ancestry, etc, delete your account, download your data, and make sure they permanently delete it. Take caution upon uploading to other random open-source sites, as the police have a fun little habit now of uploading criminal DNA and comparing it to possible relatives.
If this sounds overwhelming, it is. But you can easily initiate a plan and educate yourself very quickly by opening a temporary chat with Claude or installing https://ollama.com/download locally on your system, which is low impact and keeps the data on your system instead of being also forever logged in a frontier labs database. AIs can tell you exactly what kind of data you can opt out of, generate a plan to do it, and may likely even be able to do it themselves for you.
We can only fight AI with AI. You just have to be aware of where data goes with that, too. Opt out of model training, be aware that even temporary chats are logged for 30 days, and when closing an account, request a copy of your data and insist that they delete it.
Thank you for adding to this so thoroughly. It makes the piece even stronger and gives readers more support.
Another thing I did in the US was find older doctors who weren’t as embedded in this system and still did things like hand write notes. Most of mine retired during Covid tho. I was handed to younger doctors, and I’m not saying younger doctors aren’t sometimes amazing, but they were educated with these systems. I had to be a lot more on my toes with them, and it was harder to develop doctor/patient shorthand.
I’ve never used a DNA database. I knew that was a terrible idea from the jump. But a few of my stupid relatives did it. I’m sure we all have a few stupid relatives who’ve done this and will never see the problem with leaving their info there.
Well, actually, uploading your DNA isn't necessarily a bad idea. It's definitely not great if you accept all the defaults and don't opt out of certain data collection processes from the start. The only reason I did it was because at the time Congress had recently passed a federal law stating that DNA reports were never to be used to discriminate against health care, disability, jobs, etc. Can't wait till that changes. Maybe they buried it in the big diarrhea bill, as I like to call it.
The tremendous value that DNA analysis provides is that it gives you an unalienable accounting of what you're likely to face cancer-wise and what you could pass on to children, Plus a million other things. finding out you have that BCRA gene for breast cancer is a lifesaver if you know it.
I'm migrating over to using European services if at all possible. Their data protections are best in class and have been for a long time.
I wouldn’t worry nearly as much about Palantir when a single company, Epic, is privately held and essentially has a near-monopoly on the Electronic Health Records space. I suppose Palantir could build a bridge to them if necessary but Epic is already one great big repository of health data. See: https://www.epic.com/
I had a big appointment Wednesday so I’m a bit behind. I wound up with a grocery list of referrals from the hour-long appointment. It was a complex one. Technically a publishable case study paper could be written any time I see this provider but that’s the joy of the rare genetic disorders world.
I don’t know who my US hospital system used. I’d love to ask them to delete my account, but I don’t know if that deletes it from all who have accessed it. I suspect not.
At this point, no. The hospital has to maintain the record in electronic form. Even if you nuked your access the hospital staff will still have access for the statutory prescribed records retention period.
Should have read your comment because I just said the same thing. There's at least two or two to three other huge ones, though.
"Because this isn’t merely about what YOU think your physical and mental healthcare history is; it’s about what other people have put into the system." This reminds me that when my husband was in medical school and residency, they were taught to double whatever patients said their alcohol intake was.
I’m not surprised. I actually fired one of my doctors over something he wrote in a visit summary. I did it in front of a fellow white man (my husband) for extra humiliation.
Just found out that I am 81 years old (Not) and that I now have Afib (Not) based on one of the medications I take for Hypertension.
Did you explain in here how they have the data from my doctor's office and I missed it? I didn't think DOGE/P2025 got that far since courts have been knocking down their consolidation efforts.
If you’re part of Medicare, Medicaid, SSDI, the VA, or a healthcare network that uses Palantir, your data could already be in this system. We don’t know what they’ve consolidated or how far they’ve gotten because it has happened in a black box. I’m guessing here and giving readers ways to hopefully protect themselves.
timely and important with concrete advice. Thanks Andra
You're welcome.
Yep. My health system uses Palantir Foundry. 😤
Many do.
When I can I choose local places to get wellness care. A local med spa for hormone therapy, a local eye doctor, and a local acupuncturist. I am fed up with dealing with the huge for profits (even for the vet) so I truly hunt for places that don’t care about insurance (even though I have it) All these places I can text my doctor directly and get ahold of the actual people who work there without some stupid network system and recording to play phone tag. I hope to find other places like this for dermatology and specialists. I think people are ready for it. I know I am!