Tag: caredata

Health/care.data

NHS care.data

The state of care.data is a unbelievable and sorry tale. The more you look into it the more you think something is seriously missing. Its almost like the UK government want to sell off the NHS in return for an American style health care system (tin foil hats at the ready). I would suggest thats not the extreme view it sounds like, going by the mess which is on the table.

Following getting the NHS leaflet telling me I have a choice about where my medical records exist and the stellar work the likes of the Open Rights Group and others have done. I decided to look a little deeper into what is care data? I went to Threats to your medical confidentiality as I wanted to understand the other side which seemed to be hidden from public view.

What I found was something almost acute to the practice of health care.

The NHS will be legally barred from selling personal medical records for insurance and commercial purposes in a new drive to protect patient privacy, the Health Secretary will announce next week. Jeremy Hunt will unveil new laws to ensure that medical records can only be released when there is a “clear health benefit” rather than for “purely commercial” use by insurers and other companies.

Its important to note these facts…

  1. Care.data has nothing to do with medical care, you will get the same care regardless
  2. This is all about extracting confidential medical information from the GP-held records. Once they have it will never be deleted
  3. Identifiable data can/will be sold to almost any company. Medical research will get another slice regardless
  4. There is no medical lost from opt-ing out, this is all about access to data
  5. You can opt-out using a form or using the new FaxyourGP service but you can also opt-out people you look after/care for or are dependent on you (like your children for example)

To make things worst if you did decide to opt-out (remember its your lawful right to do so) the NHS made it extremely tricky to do so, they finally gave us 6 months more to decide.

Awwww what nice people… Nothing to do with ill thought-out communication or patient data going to insurance companies. No of course not… Whats also shocking is the lack of mass publicity this is not getting.

Me personally, once fax your GP is back will be using that service to make sure I’m opt-ed out, unless something dramatic happens. Even got a google task to remind me to opt-out…

All your care data belongs to us?

I have been looking into the health care data sharing thing in the UK a while ago but to be honest got distracted by the mass surveillance uncovering from Edward Snowden’s leaks. Luckily the Open Rights Group is keeping their watchful eyes on this issue along with many others.

I’m still making up my mind and reading about the positives and negatives, to see if I should opt out. Don’t get me wrong, I’m a public person for many things but certain things I like to keep private. I’m still learning more but I had planned to join one of the Open Right Group’s mass opt out meetups to understand a little more.

However Stefan Magdalinsk just launched #FaxYourGP.

We’re a very small group of volunteers who think it should be very easy for people to opt out of the new NHS care.data centralised database of medical records. Unless you opt out now, care.data will soon store the medical records of everyone in England, yours included, in one giant database. Our confidential health information will then be shared with companies and other public bodies.

Some people we respect think care.data is, on balance, a good thing.

Some people we respect think care.data is, on balance, a bad thing.

What we know for certain is that the NHS hasn’t made it easy for you to exercise your right to opt out. We think this really isn’t wise. The NHS leaflet explaining care.data says you should ‘let your GP know’ if you want to opt out. But GP surgeries are busy. If you ring up wanting to opt out they’ll ask you to write to them instead. That’s fair enough – their priority is treating the sick. It’s 2014. The NHS really should have made it easy to opt out via the web.

And thats the point really… Choice! It should be a educated choice not forced upon us.

As I weigh everything up, you can opt out really quickly using Stefan’s service and the envelope below. As Tim would say, Amazeballs…



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