UK: Guess who's working on a health data-slurping digital tool? DWP, 2019, Hill

https://www.theregister.co.uk/2019/02/19/dwp_health_data_tool/

Also a blog on the subject

https://universalcreditsuffer.com/2019/02/26/dwp-designing-tool-to-trawl-claimants-medical-records/

 

One of the things that doesn't get mentioned publicly very often is that medical records can be stuffed with absolutely shocking mistakes, evasions, omissions and lies. Some people have been told that their records were lost in a fire or a flood or have been lost for unknown reasons. These problems add another layer of terror on to the idea of the DWP slurping up our health data, because decisions will be made on the basis of quite a lot of fiction, or data that just isn't there.

 

There is also the issue that people with more severe ME may be effectively excluded from health care because there are not suitable domiciliary services, or people with ME may withdraw from medical care because of negative experiences of or inappropriate advice from doctors.

On the simple measure of contact with my GP, for me the number of times I see my GP is [inversely] proportial to the severity of my ME, because of the extreme difficulty in getting home visits.

 

As the DWPs decision makers are not medically qualified it will just mean either they will just ignore the medical evidence (as they often do anyway), or pick up on things like people being able to attend a hospital appointment as 'proof' that they are able to travel.

But you can be sure it will have nothing to do with helping the 'client' get the correct support.

 

Hang on! What about medical data confidentiality here? When we opted to allow our data to be centrally stored, the clear message was that it would be used so that any medical institution in the country will have access to your data, which can be potentially life saving if urgent treatment is required. But I don't recall it saying I was opting to allow outside organisations to access it for the purpose of snooping.

 

When you apply for benefits they will ask your permission for them to access your medical data, solely for your benefit, obviously.

 

I opted out! I didn't want my data put into NHS databases. And yet my data was available to a hospital A&E when they looked me up last year. I'd never set foot in the place in my life, and yet they had info about me.

Don't ever trust the NHS with anything to do with data.

 

There's apparently a move to do away with this.

Here's the US one (comment period now ended):
https://www.regulations.gov/document?D=HHS-OCR-2018-0028-0001

 

Yes, well, not having snooping might be ok for regular people, although because Facebook, it's clearly not needed anymore.

But people who get benefits, well, that's a different case and it's necessary to have a lot of snooping, to make sure there's not a lot of benefits cheats. Or to make sure every single one of the many, many benefits cheats get caught. I mean, there has to be a lot of benefits cheats to justify the huge organizational apparatus meant to catch the cheats. Much bigger effort than spent catching tax cheats. Am I right or am I right?

(post laced with sarcasm, in case not evident)

 

I think one of the huge problems for pwME is that a great many doctors believe they are faking .

 

Yes, for some reason this is thought to be some major concern that lots of people fake illness and disability. I don't get it. That's a really weird and inaccurate view.

 

To be fair I think many doctors are faking their ability, and desire, to treat the ill and disabled.

I suspect a lot would be much happier as accountants.

 

a disturbing development