Trump officials float plan for Americans to share their medical data more freely

The Trump administration and the US Centers for Medicare and Medicaid Services (CMS) have announced plans to begin building a new digital health information system, in collaboration with a growing list of private-sector companies. Dubbed the CMS Digital Health Ecosystem, the new program aims to make it easier for patients to …

[elDog]

Given the state of security in the US health biz, this will make HIPAA totally obsolete.

Not that I think it was all that effective except as forcing additional paperwork and the fear of the HIPAA police (who are still sleeping in their cruiser.)

Might as well stamp our health records on our foreheads as a huge QR - readable by anyone with a phone.

[Anonymous Coward]

Re: Given the state of security in the US health biz, this will make HIPAA totally obsolete.

Medic here. You know, funny in this whole discussion...

Your medical data is already yours. Always has been. It's yours to hold. It's yours, and only yours, to share it if you so decided. Officially, all healthcare providers, whether it's me as your treating physician, your pharmacist, your healthcare insurer, everybody, officially, according to law, should ask you for your consent before we take a peek and/ or do anything. Thing in practice is however that that is a PITA for many. For the medic with little time given to treat you. For the pharmacist with a line at the counter. For the healthcare insurer giving you those conditions and quote. For that therapy developer who wants to calculate the potential market size. Or any other data broker. In practice, patients in general don't know/ care, many just do what needs to be done. And thus the patient just moves through the system so we all can tick the box. Even in countries where privacy legislation is still a bit stronger (e.g. Germany) patients get upon intake a standard form to sign off, so allowance is given. But even there it's a formality. Or what about..? In the times that films were still the output of xray/ MRI examinations (yes, am that old), German patients got those in hand to take them home and store themselves. Nowadays, these too are "in the cloud" there. And stay there. On somebody elses hard drive... Out of the control of the patient, in blue eyed territory.

So right now, your medical data is already yours. (Although I invite you to physically get it ;))). So what is this then? Well, as we know, you can make money with data. That includes a patients health data. That's why all the companies mentioned, and no doubt a couple more, are flocking like vultures circling a carcass. Because, as said, it's a PITA right now to just take those data. Because it (in most countries) still needs patient consent. So let's remove that... and market it, "unlock its opportunity", only "for your choice for convenience" ™ of course. Seen it before, and will see it again.

[Cliffwilliams44]

Re: Given the state of security in the US health biz, this will make HIPAA totally obsolete.

Yes, all this is true, but as someone who has had to change providers 3 times in the last 3 years, as my PC 1st changed medical groups (he left on not so good terms), and then the group she joined when out of business (in our area), it was a pain getting my records moved between providers, it took months. The only upside is that my new PC is part for the group my previous PC was originally part of, so there's that.

The biggest problem with this new system is going to be social engineering. If the patient is the arbiter of access, there really isn't must that can be done to stop that. People are stupid, they can be talked into giving away their children if they are told there is a benefit to them in doing so! (that's sarcasm BTW)

[Anonymous Coward]

Re: Given the state of security in the US health biz, this will make HIPAA totally obsolete.

> People are stupid, they can be talked into giving away their children if they are told there is a benefit to them in doing so! (that's sarcasm BTW)

Not as much sarcasm as you'd wish.

[Anonymous Coward]

Re: Given the state of security in the US health biz, this will make HIPAA totally obsolete.

But they are a gold mine - and some digger are ready to excavate it, with dynamite if needed. Digital records of medical are OK as long as they help you, not insurers or other business that works against you. Such records, if needed, should be managed by a specific authority and access strictly controlled. Here only medics in an emergency life-threatening situation can access records without the patient approval.

[Anonymous Coward]

Re: Given the state of security in the US health biz, this will make HIPAA totally obsolete.

I also work in hospital setting in the US and much of what you say is complete nonsense. Of course your doctor, when treating you, does not need to ask your permission to access your data *every time*. That would be utterly stupid and render treating anyone impossible, given the chain of people who sometimes need to access information. For example radiologist to read scans and transcribe into the medical record.

And I've physically obtained medical data on a DVD several times when needed. It's easy.

If you're that uninformed please find a more appropriate occupation. You sound like you're just making shit up to have something "provocative" to say.

[Gene Cash]

Re: Given the state of security in the US health biz, this will make HIPAA totally obsolete.

> And I've physically obtained medical data on a DVD several times when needed. It's easy.

LOL, no, it's not. I've got CDs/DVDs of my MRIs and angiograms, and it was a nightmare to get them. I felt like I was crawling on glass in Nakatomi Plaza.

In one case it took nearly 6 months. I had responses like "we don't keep those", "those are only for your doctor", "you're not allowed to see that", "you don't need them, you can't read them anyway", "you don't need them, you wouldn't understand them", and "that's going to be very expensive to copy and send that"

I don't think OP is the uninformed one here.

[VoiceOfTruth]

A quick lesson on sed

echo "The Trump administration" | sed s'/administration/regime/'

[Anonymous Coward]

Re: A quick lesson on sed

Hopefully this lesson from the UK will get a little focus.

https://pubmed.ncbi.nlm.nih.gov/28166675/

As well as current NHS Federated Data Platform/Palantir … who are noted as not on the list.

That being said US is hugely complicated by the perversion of the profit in Healthcare - regardless of this been Medicare/Medicaid.

You would have thought Oracle Health would be too busy with the VA Cerner perma-disaster and fixing that……

[Anonymous Coward]

Re: A quick lesson on sed

As well as current NHS Federated Data Platform/Palantir

This indeed. And to make it international...

https://www.tagesschau.de/inland/dobrindt-einsatz-palantir-100.html

Tagesschau: Dobrindt prüft bundesweiten Einsatz von Palantir-Software - Stand: 30.07.2025 13:36 Uhr

<translation> National news provider: Dobrindt (minister of Interior) considers nationwide use of Palantir software - Status: July 30, 2025, 1:36 p.m. </translation>

[Winkypop]

America

Everything for sale.

Everything must go.

[Pascal Monett]

Oh really ?

"The benefits to millions of Americans for me will be enormous. We I will save time, we'll save make money, and most importantly, we'll save lives sell more merch."

TFTFY

Trump never does anything for anyone but himself. He has a great opportunity here to look good, but just wait to see how the usual suspects are going to be the ones benefitting the most.

[DoctorNine]

Privacy

We used to have this thing. Now that Pandora is out of her box, looking around the shops, we will never hear quiet again.

[Anonymous Coward]

"biggies, and for-profit insurance all eagerly rubbing their hands"

Hands weren't the part of these tossers' anatomy that first came to mind ...

[Wang Cores]

The worms manage to find an even lower bar to shimmy under. The fucks the point of any of this? Teabagging the few of us who thought this country could do something other than shit itself?

It's more effort to be this petty and scammy than it is to run shit as it was before. jesus christ. In ten years they'll have it such that "woke" thoughts like "you should be able to refund defective merchandise" or "washing your hands" will have you thrown in the slammer.

[Bob Whitcombe]

Trump and his cronies have disabused the average US citizen of trusting anything to the Government - as it is all Fraud, Waste and Abuse. The number the Republicans did on Obamacare to turn it into a thing of scorn - when at its root it was an effort to remove the veil from the horridly obtuse pricing system for medical services in the US. Big Med and the Insurance companies were willing to sacrifice a few point in drug prices, but they demanded the veil remain intact. Obama-care sought to tie people, procedures and outcomes to costs. Insurance was having none of that since they have turned medical pricing into a black box that they control.

Now the honest and plain dealing Trumpers, already deep in the pockets of the insurance companies, and who valiantly tried to dismantle Obama-care and its restriction against pricing out of the market people with pre-existing conditions - are asking you to kindly turn over data streams to your coronary, respiratory, and pulse rates on a real-time basis so they can track against your existing medical records and decide before you even have a clue whether your insurance company will cover or drop your ass.

Uh, I would have done that for Biden, I did that for 23 and Me, but I have all my records encrypted and stored offshore in a data center being built in Taiwan, specifically so Trump can't get them.

[Anonymous Coward]

Improve your overall health

- Easier back-handers

- Improved shakedowns

- Grift and lift with ease

And for potential employers:

- Spy before you try

[Bob Whitcombe]

Give My Medical Data to Trump ???

Republicans sought to destroy Obama-care at every step. Labeling it the repository of "Death Panels", impractical and risking all personal medical information. The unrealized goal of Obama-care was to lift the veil of secrecy on hospital and insurance pricing so that people, procedures, outcomes and costs could be analyzed and standards set for standard procedures as is done in every civilized country with a National Health Care plan. lack of such standards is one reason Maternal Mortality rate is 3 times higher in the US than in the EU, Japan, Korea, Iceland, Canada, Australia, and even Greenland.

So now, that good old honest, square dealing, straight shooting Trump wants to collect all our confidential medical records and mate them with real time streaming data on our heart rates, respiratory conditions, pulse and oxygen levels. Trump is so far up the Insurance Industries' nose that they made it their goal in their first term to kill Obama-Care, and would have if they had not been unceremoniously McCained. While the end goals of Obama-Care were not fully realized, they did establish the principle that insurance could not discriminate against clients based on pre-existing conditions. They want that gone.

Now come Trump seeking to collect that information, mate real time streams of your personal health with your existing health records, turn that over to insurance companies so they can drop you before you even know your undiagnosed heart condition is about to flare up. You can call me stupid - but I am not. That is why all my medical information has been encrypted and lives on a server in Taiwan. I trust the Chinese will do something more positive with that information than Trump and OMG ...Kennedy????

[Paul Herber]

Re: Give My Medical Data to Trump ???

s/nose/arse/

[Cliffwilliams44]

Re: Give My Medical Data to Trump ???

You really do not have a clue, do you!

Put down the Kool-Aid!

[Pussifer]

Re: Give My Medical Data to Trump ???

"You really do not have a clue, do you!" - Cliffwilliams44

And you do? Please elaborate for us.

[GloriousVictoryForThePeople]

"Apps for managing obesity and diabetes"?

Uber Eats?

No, New Truth Eats, pay with Crunchy Crypto

[Dan 55]

Re: "Apps for managing obesity and diabetes"?

How about sending conversational AI assistants? For when you absolutely want your medical data to go to Big Tech to train their LLMs.

[ComputerSays_noAbsolutelyNo]

What could possibly go wrong?

Everything, I guess, everything.

[Eclectic Man]

"entrenched interests"

They would include the patients whose data it actually is, I'm guessing.

[Ian Johnston]

Software to manage obesity? That's a big fat "no".

[Wang Cores]

I'll tell you as someone who was morbidly obese, and managed his own weight loss to 1/2 of their fattest (175 now), the real problem is the shit food and getting exercise is impossible outside of work.

It took years of committed effort, fighting everything in the US from stopping my coffee and soda habit, cooking my own food, to riding a bike on a 60 mph roadway while flabby morons in SUVs zip by me barely managing to steer while uploading a tiktok.

No society goes from being a nation of underweight fighting men to fat fucks within 3-4 generations without effort.

So an app to call people fat is just another way to heap abuse upon people trying to improve their situation and elide the role entrenched interests play in these outcomes.

[Eclectic Man]

Aside - SUV driving

Firstly, congratulations on the weight loss. Very well done.

Secondly, I am convinced that people who drive large cars and 'SUV's, have no idea of the air turbulence caused by their passing. I was once nearly knocked off my (small) motorbike when slowing down for a turn by the wind from a large Mercedes limousine zooming past to get through the lights as they changed from green to amber. I always give cyclists and motorcyclists as much space on the road as possible when overtaking.

[Frank Bitterlich]

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