Here’s another view point of care.data

http://www.england.nhs.uk/2014/01/15/geraint-lewis/

And (sorry, Daily Mail link) here’s some news about it.

http://www.dailymail.co.uk/news/article ... -data.html

There are so many things wrong about it. It is not as if they have a good record to defend. The medical research aspects alone would be good for some conditions but the fact that anyone can buy the data like a Spy agency or a health insurance company could get the data and then be able to boost your premiums to the point you cannot afford insurance, based on what they now think they know. The spy agency could actually have a valid excuse already if the person was a terrorist, and the health records could help track them down. Though there already safeguards so that they can get this information without violating our rights.

If it were for purely research purposes, they wouldn't need identifiers to be upload. Currently, information that gets uploaded is stuff that has no patient demographic info. As an example, we get paid for hitting say 90% of a target for flu vaccines. Our own computer system runs an instruction that looks for people who are eligible for a flu vaccine, classifies them (eg pregnant, over 65, 18-65 and health probs) and then looks at how many have had a flu vaccine and meet the criteria. As a result, the only thing that gets uploaded is numbers. No patient data gets uploaded.

Why would researchers need your NHS number, DOB, or postcode? At best, you need a random number to assign to a person's data, a year of birth, and a rough geographical area. This could all be done in such a way that you could look at the data and say "well there are 45 people in Solihull who have ulcerative colitis and 44 are on the best treatment" or "in Basingstoke, there are 100 but only 32 are on the best treatment" etc.

In the past, I've always been suspicious of the need to code people for QoF. I didn't like the idea of targets, but since the Govt wanted to reduce GP pay and get them to "earn" it back through QoF, we had to jump through the hoops. It felt very much like we as GPs were being ordered to create a database. Lo and behold, we've essentially done the Govt's dirty work for them.

Hmm, I talked to my doctor about this recently.
He suggested that more than half of GP's had refused to allow their data to be shared with the care.data system.
If he's correct it makes you wonder about the BMA and Royal College of GP's support for the project.

Backhanders or knighthoods?

Not really half. Not sure why he said that. Maybe half in his CCG? Certainly not half of the UK GPs.

Didn't really go into where his figures came from. I was handing over my opt out letter at the time. Still haven't had the info leaflet about it yet.

In other news, there's an article about care.data in issue 127/April 2014 of Custom PC.

http://www.bbc.co.uk/news/health-26151458

The BBC’s article is skating very close to the approved Government line. However, the Telegraph raises other fears:


http://www.telegraph.co.uk/journalists/ ... .data.html

I am still surprised that this is “opt out” - I am reminded of the Phorm debacle, where the ICO and others were very keen for any data logging to be opt in, and more recently the cookie business which, again, required some form of physical opt in (until the “informed consent” last minute cop-out which pissed off every web developer in the land).

I am wondering if the EU has a stance on this, or even campaigning groups like Privacy International.

Long story short, it'll be the GPs who catch the flak whether refusing to hand over the data, inform patients of what's happening, if it goes missing, gets misused, whatever.

^^^Yup. Combine this with media spin and PCTs being changed into CCGs with GPs "at the helm" which is doomed to fail* and you can see that the Govt want to kill off GPs.



* If you'd forgotten, CCGs are in charge of commissioning NHS services. There will be a few GPs on the CCG bench but they are always outnumbered by non-GPs, non-medical professionals and laypersons. Hence, GPs could want to commision a service, be outvoted and the outcome will still be blamed on GPs. Great way of the Govt to wash their hands off this.

38 Degrees is polling people on its email list about organising an mass opt-out.

Fax your MP are doing a 'you fill in the details, we'll do it for you' website

FaxYourGP

^^^Went to post that on a doctors' forum only to find out it had already been posted about 90 mins ago.

http://www.wired.co.uk/news/archive/201 ... -care-data

Brilliant. I have done that.