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[Scottiesmum]

I thought I heard something about this being postponed  --  then found this    http://www.politicshome.com/uk/article/93214/david_davis_mp_welcomes_postponement_of_nhs_database_for_6_months.html         - 

When I was first diagnosed in November 2012 I was asked if I would be willing for my 'health' details to be available to other hospitals associated with the CHU Bordeaux, including the CHU in Toulouse.  (  CHU  -  Centres Hospitaliers Universitaires ) This database is available ONLY within the specified hospitals, of which I was given full details.   In the hope that any details might be of use in the development of future treatments and might help someone else, I agreed and signed quite happily   -   but a database as the one suggested      

We are also registered at a local pharmacy  (in the next village) so any medications come from there; the pharmaceutics here have their own database, and we hae the choice to use it or not; it is very similar to the Summary Care Record in BB's post .... if at any time we are anywhere in France and have either forgotten to take medication with us, or fall ill, we simply present the local pharmacy there with our Carte Vital  (our Health card - looks like a credit card but can't buy shoes with it  )  and voila - they have all the information regarding medication, dosage etc.

[kitz]

Several years ago I asked if I minded having further tests done and results shared for research purposes and I had no objection in the slightest and readily agrred.
My thoughts were Ive got to go through this anyhow, and if I have to have a few additional tests and the odd extra biopsy which went to the research team along with questionnaires and my medical history then it was for the common good.  In fact when the results were published nationwide I actually felt a bit good and thought to myself, yep I was one of those.

But this latest development just seems to be a total blanket to give practically anyone access.   Maybe Im too cynical, but I really have no confidence in certain organisations when it comes to security.   In my mind the security measures arent good enough.  On all but the newest system anyone can look at your data and leave no trace that theyve been snooping.  Theres an awful lot of people who will have access, and Im pretty certain that there will be someone somewhere who will succumb to temptation and abuse what trust has been placed in them either for financial or other reasons

[BritBrat]

Could I be identified?

When I was diagnosed I was 1 of 50 in the world with it, and 3 or 4 in the UK.

Do you think they could find out who I am ?

I have no objection to the idea, but I  would want to be able to view and delete what is on my records, it could
be just wrong or it could be I don't want others to know that information.

I don't see why the data from a GP surgery with its post code and not that of the individual would still be good enough for research, why do they need NHS number?

I was in a NHS clinic recently and the Nurses on the station were changing one of their system passwords and asking the other how to do  it, they told me the old and new password but only because I was close to the nurses station. 

I think I could of got them sacked if I had reported it.

So if you think its secure you are dreaming.

[ryant704]

http://boingboing.net/2014/03/03/full-nhs-hospital-records-uplo.html

They take good care of records so...

[kitz]

Exactly !   

After reading this I now even feel like opting out of everything.

he entire NHS hospital patient database for England was handed over to management consultants who uploaded it to Google servers based outside the UK.

Certain gov depts really dont seem to have a clue how to keep data safe.    This type of information is classed as sensitive under the DPA, so do we really trust them to do what they are supposed to?  Shipping the info abroad on to googles servers isnt what Id call a good move.  Perhaps Im being a bit paranoid, but I dont 100% trust google either, they seem to be accumulating a bit too much data these days for my liking.

In this Act “sensitive personal data” means personal data consisting of information as to—

(a)the racial or ethnic origin of the data subject,

(b)his political opinions,

(c)his religious beliefs or other beliefs of a similar nature,

(d)whether he is a member of a trade union (within the meaning of the M1Trade Union and Labour Relations (Consolidation) Act 1992),

(e)his physical or mental health or condition,

(f)his sexual life,

(g)the commission or alleged commission by him of any offence, or

(h)any proceedings for any offence committed or alleged to have been committed by him, the disposal of such proceedings or the sentence of any court in such proceedings.

---
btw I notice the FaxYourGP facility isnt available atm either.

The care.data project has been postponed until the autumn.
We've decided to follow Ben Goldacre's advice to wait until May to see what improvements are made.