NHS sharing personal care data

kuepper

I've just heard about this from a friend and now I've googled it have real concerns about it as I think what I tell my GP should remain confidential. Apparently every house was supposed to get a leaflet about it by now but I can't find anyone round where I live who has. Does anyone know when the deadline is for opting out of this andhow you do it as I can't find it mentioned on the NHS pages?

Mega_Maniac

I think you have to pop down to your GP, or give them a ring.

It's absolutely shocking that they are doing this, it is the most personal information told in confidence.

zaax

They say they will keep the data safe today, but what about tomorrow when another minsister deside is it a good idea to sell the data private company.

Anyway I suspect the whole NHS database will fit on to a 64gb memory stick that can be left in any pub.

patanne

It looks as if they will be including lifestyle information as well as strictly medical. "understand who is most at risk of particular diseases & conditions". That is a direct quote from the leaflet. Even if you exclude yourself there is a comment "This note will prevent your confidential information being used other than in special circumstances." They say this is for public health purposes.

The next little joy is "We sometimes release (this can mean sell) confidential information to approved researchers, if this is allowed by law and meets the strict rules that are in place to protect your privacy" But they could change these laws & rules tomorrow.

Yes I do know I am paranoid. I also have a significant lack of trust. Just because you're paranoid doesn't mean that they are not out to get you!

bod1467

Infamy! Infamy! They've all got it in for me!

agrinnall

For an alternative view on why data sharing may be a good thing:

http://www.bbc.co.uk/news/health-25988534

[Deleted User]

agrinnall wrote: »

For an alternative view on why data sharing may be a good thing:

http://www.bbc.co.uk/news/health-25988534

I completely agree with that.. there isn't a good mechanism yet of creating a database of 'outcomes' vs 'treatments' on a large scale.

There are also lots of other things to be found out - like how some currently used drugs for condition X can help condition Y.. the only way to find this out is to use massive datasets

Personally, i feel the NHS should hold this data; not a private organisation, and the NHS should be doing the research

(Waiver: I work for a major UK healthcare IT firm)

keithdc

agrinnall wrote: »

For an alternative view on why data sharing may be a good thing:

http://www.bbc.co.uk/news/health-25988534

Conspiracy theorists are never interested in alternative views!!

dinglebert

This has gone on for a number of years in Scotland and it saves lives. The audit trail on who is looking at what record is very tight and individual records are only looked at with the patients permission (unless the patient is unable to give this in an emergency). In the cases where say the patient was not physically able to give permission these are all investigated.

Not to share data between primary and secondary care would be a backward step.

[Deleted User]

dinglebert - there is a plan to sell of GP records to private firms.. this isn't about data sharing between primary and secondary care

WTFH

zaax wrote: »

Anyway I suspect the whole NHS database will fit on to a 64gb memory stick that can be left in any pub.

While it might get left down the pub, I doubt it would be 64GB (that works out at about 1kB per person. To record a person's name, address and NHS/NI number takes roughly half of that.
If I was sizing a database, I'd start with a minimum of 1MB per person (excluding notes which would be held in a blob).
The database would need several tables allowing for better storage and retrieval of data and a good data mining tool over it.
Better yet, implement an ERP system (and don't use any of the Big 5 to "help" or "advise"). Ballpark of 250TB storage should do for the first year or two.

(waiver: I wonder if I know ringo )