Opting out of NHS health data sale

[OddBoots]

I wasn't sure what section to put this so I hope here is okay.

Following the news that there are government plans to sell identifiable medical information I'm really not sure what to think. I like the idea of it being easier for research to be undertaken but I'm not sure this is the way to go about it.

There's a site here with information about how to opt out and I'm thinking of opting out until it's a bit clearer what is going to happen to the information.

[TheABB]

My latest post folks on our medical records' sharing, if you're still interested, care.data has not gone away. The plan to extract our GP medical records into central databases for secondary uses, which is not to be confused with any sharing for our direct medical care, by medical staff. The CCG areas in which the pilot will proceed have been announced [Leeds, Blackburn and Derent, Somerset, Hampshire West], but no further details of when or which GP practices.

I blogged an open letter in the hope of getting answers which patient and public and other interested organisations have asked about in the last 6 months. Many remain unanswered, and I believe they should be answered before the pilots, for both those who are as yet uniformed or uncertain about what care.data is, and also to ensure that process and plans are as transparent, secure and sound as possible for participants.

jenpersson.com/pathfinder/ >> also on the Mumsnet blogger's network under: www.mumsnet.com/bloggers-network/activism

[tribpot]

These slides were tweeted today.

[TheABB]

For anyone interested in care.data, the six months has now passed since the second pause in the implementation, but there has not been any official update from the Patient and Information Directorate at NHS England for some time. I've put together some history, my open questions and opinion on the progress, on my blog here > jenpersson.com/care-data-pause-six-months-on/ and updates/keep in touch on twitter: @theABB

[TheABB]

For anyone interested in care.data, the programme to share our medical records with the Health and Social Care Information Centre, since it's been quiet in the news just thought I'd share current status from my lay POV. If you are interested in keeping up to date or have questions, or want to share opinions, keep in touch: I post updates and thoughts on my blog here jenpersson.com, and on twitter: @theABB

May 7th: There were some parliamentary amendments proposed and supported by the Wellcome Trust and [http://www.amrc.org.uk/blog/parliament-debates-the-use-of-patient-data-as-part-of-the-caredata-programme] amongst others to the Care Bill 2012, which was debated in the Lords - it went to a vote and they were rejected. They included request for a legal opt out (right now it's only Jeremy Hunt's word that there is one), a statutory independent oversight process/body, and better defined uses. Commercial uses are still permitted, if 'for the purposes of health ' and improving care. Which is a fairly broad definition as far as reasonably applicable. Details here>> [https://medconfidential.org/2014/lords-care-bill/]

There's regular meetings of the care.data advisory committee, [http://www.ehi.co.uk/news/EHI/9303/care.data-advisory-group-announced] and their members and minutes are posted here> [http://www.england.nhs.uk/ourwork/tsd/ad-grp/]

Latest connected news: [https://medconfidential.org/2014/is-jeremy-hunt-serious-about-shutting-down-insurers-access-to-your-medical-records/]

Current: The Partridge Report, an audit of data recipients from pre-April 2013 was due at the end of May. That should help clarify where our hospital records (called HES) have gone in the past, who received them and for what purposes. No update on it yet, but it seems to have been on the agenda at latest HSCIC Board meeting, June 4th. No update yet.
If like last time, it's released on the HSCIC news page it will be here - don't know when >> [http://www.hscic.gov.uk/news-and-events]

Background overview: [http://www.hscic.gov.uk/article/3525/Caredata]

[ParsingFancy]

Oh god, that is the funniest thing I have seen for a long time tribpot.

I came back on the thread to post about the bodies which have accessed care.data Apr-Dec 2013.

The list includes management consultancies and drug firms.

[tryingreallytrying]

Brilliant.

Especially the bit at the end about ATOS - and the shifty looks.

Oh so true.

[Mrsdavidcaruso]

tribot I have seen that its brilliant

[tribpot]

.

[Mrsdavidcaruso]

Oh yes there is a lot coming out now that we would NOT have heard about if there hadn't been such a campaign against it and as I have said Even the criminal offence of unauthorised disclosure or obtaining personal information carries only a fine & often dealt with by a magistrate.

So you wouldn't see any senior NHS managers or the CEO of an Insurance company sharing a 6x6 cell with a tatooed murderer in Pentonville

[tribpot]

Indeed. Btw I don't believe that any laws were broken in the sale of the data (which doesn't make it right), I guess that remains to be seen when the matter is fully investigated. But I agree that a full disclosure of the matter would be better than the weasely answer given to the PSC today that it was a different incarnation of HSCIC and therefore - well, shit happens. (More or less).

[Mrsdavidcaruso]

Looks like a lot of people are not impressed

[tryingreallytrying]

MrsDavid - that's dreadful. The individuals responsible for this unauthorised sale of all our most intimate private data need to be found personally, criminally responsible and jailed for a long, long time. Their names need to be published. And everyone whose data has been illegally accessed and sold - I certainly did not give permission for my medical data to be sold - needs to be given generous compensation.

[tribpot]

This is a recording of the Parliamentary Select Committee meeting on care.data today.

Ben Goldacre was live tweeting it and is not impressed.

[Mrsdavidcaruso]

I have been assured that even the criminal offence of unauthorised disclosure or obtaining personal information carries only a fine & often dealt with by a magistrate, not much of a deterrent for multi million pound companies with high priced legal teams at their disposal

[tribpot]

I think I read in one of the reports that the total cost was about £2,200.

The second Guardian story is about another commercial interest in the data collected by HSCIC - this appears to have been a lobbying attempt to speed up access for pharmaceutical companies to drug information. Unlike the sale of data to the insurance industry, which HSCIC has claimed would not be possible under current legislation, this was more recent. Although the article does not claim the attempt was successful.

[tryingreallytrying]

www.theguardian.com/society/2014/feb/24/drug-makers-patient-records-database

[tryingreallytrying]

But not at the top of the front page - hidden way down in both the Guardian and Mail.

[tryingreallytrying]

www.dailymail.co.uk/news/article-2566397/The-insurance-firms-buy-data-NHS-patient.html

[tryingreallytrying]

www.theguardian.com/society/2014/feb/24/hospital-records-nhs-patients-insurance

[MyCatIsFat]

I wonder how much they got the insurance companies to pay?

[tryingreallytrying]

Is in the Guardian

So much for the law - the govt discovered that voters hated this so they just went ahead and sold our details illegally. :(

[MyCatIsFat]

..and a deafening silence in the media

[umpity]

I gather ther is something on this in Telegraph (front page)
24th February

[CFSKate]

Hospital records of all NHS patients sold to insurers

[TheABB]

www.bbc.co.uk/programmes/p01s07d1 The link you mentioned to Radio 5 - Sir Professor Brian Jarman OBE called for a delay to sort it all out. We shall watch next steps with interest.

FYI - there are two more active threads on this - we seem to have all overlapped - this thread has 100 messages:

www.mumsnet.com/Talk/am_i_being_unreasonable/1981636-Not-to-want-the-NHS-to-share-my-confidential-medical-records

Shall we move to this, longer, the 256 posts "am I being unreasonable" one? Is that 'etiquette" to suggest? Then we can all be sharing the same news/concerns/info/updates in one place?

And

www.mumsnet.com/Talk/_chat/1964118-What-does-the-NHS-share-about-us-for-any-purpose-other-than-providing-care

(26 posts)