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RFKjr wants to start amassing heretofore private medical records
Posted on 4/22/25 at 11:56 pm
Posted on 4/22/25 at 11:56 pm
The National Institutes of Health is amassing private medical records from a number of federal and commercial databases to give to Health and Human Services Secretary Robert F. Kennedy Jr.'s new effort to study autism, the NIH's top official said Monday.
The new data will allow external researchers picked for Kennedy's autism studies to study "comprehensive" patient data with "broad coverage" of the U.S. population for the first time, NIH Director Dr. Jay Bhattacharya said.
"The idea of the platform is that the existing data resources are often fragmented and difficult to obtain. The NIH itself will often pay multiple times for the same data resource. Even data resources that are within the federal government are difficult to obtain," he said in a presentation to the agency's advisers. Medication records from pharmacy chains, lab testing and genomics data from patients treated by the Department of Veterans Affairs and Indian Health Service, claims from private insurers and data from smartwatches and fitness trackers will all be linked together, he said. The NIH is also now in talks with the Centers for Medicare and Medicaid Services to broaden agreements governing access to their data
In addition, a new disease registry is being launched to track Americans with autism, which will be integrated into the data. Advocacy groups and experts have called out Kennedy for describing autism as a "preventable disease," which they say is stigmatizing and unfounded.
LINK /
The new data will allow external researchers picked for Kennedy's autism studies to study "comprehensive" patient data with "broad coverage" of the U.S. population for the first time, NIH Director Dr. Jay Bhattacharya said.
"The idea of the platform is that the existing data resources are often fragmented and difficult to obtain. The NIH itself will often pay multiple times for the same data resource. Even data resources that are within the federal government are difficult to obtain," he said in a presentation to the agency's advisers. Medication records from pharmacy chains, lab testing and genomics data from patients treated by the Department of Veterans Affairs and Indian Health Service, claims from private insurers and data from smartwatches and fitness trackers will all be linked together, he said. The NIH is also now in talks with the Centers for Medicare and Medicaid Services to broaden agreements governing access to their data
In addition, a new disease registry is being launched to track Americans with autism, which will be integrated into the data. Advocacy groups and experts have called out Kennedy for describing autism as a "preventable disease," which they say is stigmatizing and unfounded.
LINK /
This post was edited on 4/22/25 at 11:58 pm
24
Posted on 4/23/25 at 12:00 am to Eurocat
It will be interesting to see how much people value their privacy with this one.
Posted on 4/23/25 at 12:01 am to Eurocat
Cure for cancer denied by patients who agree that confirming their condition is too dehumanizing.
Posted on 4/23/25 at 12:03 am to Eurocat
quote:
While the selected researchers will be able to access and study the private medical data, Bhattacharya said they will not be able to download it. He promised "state of the art protections" to protect confidentiality.
By bringing the data into one place, he said it could give health agencies a window into "real-time health monitoring" on Americans for studying other health problems too.
"What we're proposing is a transformative real-world data initiative, which aims to provide a robust and secure computational data platform for chronic disease and autism research," he said.
This post was edited on 4/23/25 at 12:05 am
Posted on 4/23/25 at 12:06 am to Eurocat
Just detach names from the data, I assumed this was already happening.
Posted on 4/23/25 at 12:08 am to Eurocat
quote:
Eurocat
I bet you used to like Bobby Kennedy.
One question for you. Did it bother you even just a little that your party, the Democrat Party, wouldn't even allow Bobby Kennedy - A KENNEDY - to oppose Joe Biden in the 2024 Democrat primaries? That was Kennedy's first choice, but the party wouldn't even allow him to compete against Biden.
Didn't that strike you as being just a touch totalitarian in nature?
Posted on 4/23/25 at 12:13 am to Eurocat
Studies are done all the time using medical data from hospitals/clinics. You've never read one where the "pool" is 40K or more?
Throwing the term private on this is pretty lame. It can be done while preserving privacy.
Throwing the term private on this is pretty lame. It can be done while preserving privacy.
Posted on 4/23/25 at 12:14 am to Eurocat
Omg!!!
Not a patient data review!!!!
Not a patient data review!!!!
Posted on 4/23/25 at 12:38 am to Eurocat
quote:
private medical records
This is not a thing. Hasn't been since government and insurance companies got involved in healthcare.
Am I okay with that? No. Can we do anything about it? No.
Are you as concerned about government and corporations harvesting every other bit of data about us as you are medical histories?
Why are you against finding the cause of autism and a possible cure?
Posted on 4/23/25 at 12:55 am to Von
Gotta agree with Von here. The medical companies already have our sensitive info, and many, perhaps most, are not using it in a good way. What if, we actually used some of this medical data in a useful way. The status quo queried all our sensitive medical info already, and so did shady companies like 23andme. It's a bit too late to protest your privacy among the medical community. Unless you're a "live off the land" Amish, you probably don't have anything left to conceal anyway, at least in terms of your health status. What we usually see in studies is a peer reviewed report by a corrupt enterprise, and a cover-up after cover-up to protect bad medical practice. Perhaps some transparency could bring some hope for some.
Posted on 4/23/25 at 2:25 am to Eurocat
quote:
The idea of the platform is that the existing data resources are often fragmented and difficult to obtain. The NIH itself will often pay multiple times for the same data resource.
So, the goal is to use existing data more effectively. Why should I be upset again?
Posted on 4/23/25 at 3:07 am to Eurocat
RFK is militantly stupid.
Posted on 4/23/25 at 3:46 am to Eurocat
I love what RFK is doing because he seems like the first guy to actually give a frick about making Americans healthy in my entire lifetime but this is a big nope from me. If people want to opt in voluntarily then whatever.
Posted on 4/23/25 at 4:03 am to Eurocat
You do know that the Chinese already have this
Posted on 4/23/25 at 4:10 am to cssamerican
quote:People would still have to consent to their data being shared to meet IRB standards.
Just detach names from the data, I
Posted on 4/23/25 at 4:12 am to cssamerican
quote:
Just detach names from the data, I assumed this was already happening.
Yes this isn’t very hard, plenty of ways to make these where names don’t need to be in the information. You could just assign everyone basically an employee id.
The lefts nonstop whining over fake issues gets tiring
Posted on 4/23/25 at 4:29 am to crazy4lsu
quote:
RFK is militantly stupid.
Well that certainly makes no sense whatsoever
Posted on 4/23/25 at 4:59 am to LegendInMyMind
quote:
It will be interesting to see how much people value their privacy with this one.
Is that even an issue here? I didn’t read the link, but the writeup made it sound like the government already has the data.
Posted on 4/23/25 at 5:00 am to cssamerican
quote:There is more to "de-identifying" protected health information. But they have been doing this since April, 2003, for research. I think they can figure it out.
Just detach names from the data, I assumed this was already happening.
This post was edited on 4/23/25 at 5:27 am
Posted on 4/23/25 at 5:40 am to Diamondawg
sounds like we have yet another Eurocat fail
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