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.

I was aware there were serious problems with the data they were proposing to sell - like, it's not actually anonymous.

Are they still pressing on without solving that? Numpties.

Thanks for the opt-out link: will be using and sharing.

Thanks, OddBoots, really appreciate that.

I was wondering about this too. I am a bit confused about why the data wouldn't be confidential as if they only need the info for research then I can't see why it would need to be traceable.

The article says "Names and addresses will not be uploaded but date of birth, postcode, gender and ethnicity all will." - I can see why each of those things could be useful in research but together it would be quite easy to gain an identity.

They'll also be uploading everyone's NHS number with their data.

So, not anonymous by any measure.

How is this allowed under data protection or whatever the legislation is?

There hasn't been much publicity about this and all I can find is in Daily Mail which probably isn't that reliable.

It does sound as if there is potential to be concerned. Perhaps if we keep posting a GP on here will notice the thread and give some info!

There's an article in Pulse, the journal for GPs - not that I've read it all yet.

Wow! I'm appalled by this. Will they include children's data in this? Probably, if it's to go towards research. Will be firing off a dew of those letters for me and the kids tomorrow!

Ive skim read the article in Pulse - and it looks like GPs have the responsibility to inform patients about this. Presumably they will send letters or something letting us know how we can opt out.

This is such a bloody awful idea it's hard to know where to begin to describe it.

I shall definitely be opting out, for myself and my (minor) DC.

But I hope this is just a DM garble, or theorising well ahead of any actual plans. Does anyone know if GPs will be required to tell patients about an opt out, or are we indeed reliant on campaigning organisations and the press?

Any GPs out there with any info???

As far as I am concerned, the default position should be that no data is shared without gaining consent.

Thanks for raising this. Working in healthcare people do seem to hold the following opinions

1. Don't give a toss....do what you like with my data
2. Would like to be informed in principle (but not that interested in following it up)
3. Convinced that the NHS is irresponsibly selling data for nefarious gain
4. Fed up that multiple agencies (hospital, GP, screening programme, flu vaccination clinic, A&E) appear unable to share data amongst themselves

My experience is that digital data held on Connecting for Health (new name escapes me...but 'the spine') is very secure and contained so that staff cannot access it easily. Ironically this is the data which causes most angst for people as they perceive it is 'open'

Patient notes are left lying around (wards...offices and in boxes awaiting transit)

Other databases like radiology and the hospital's own medical letters are open to lots of staff without adequate audit of who is accessing what. As a staff member it's disconcerting to know that my employees can access all my records

If I request a review of access they would probably do this retrospectively - do I ask that it is done monthly? yearly? 5 yearly? I have known several office staff who had no hesitation in looking up others results.

So you can sign this letter...so a person in a remote location who doesn't know you can't access data...but the mother at school who knows you and works in the X-ray dept booking patients in can

One doesn't make the other right. However I do think this sort of activity is probably the least threatening to an individual right to privacy and dignity

I think this is similar to when the DVLA sold their data a thread here

Crazy, crazy, crazy.

whoa

subbing

Have checked my GPs website - there is nothing on there about this.

It looks like I'm quite late to this, this Guardian article is dated from May.

"The charging structure for "bespoke patient-level extracts" was revealed when HSCIC put up a "cost calculator" to work out how much prospective customers would pay for sensitive hospital data. The "indicative fee" for a full set of 20 years' inpatient data was about £8,000 including £140 to make the records identifiable."

Problem is, Hen, it's not just "a person in a remote location who doesn't know you" who can see the data.

It's anybody who develops an interest in you and gets themselves on the accredited list.

Eventually that could be insurance companies, banks, the DWP, Education Authority, potential employers...

It's an absolutely massive expansion from people who work in healthcare - and completely legal, unlike your healthcare office colleagues who should face disciplinary action for looking up other people's results.

Bespoke patient level extracts including making them identifiable?

WTAF?

So a private company can pay to have all details about a person they find interesting, right down to who they are? That is really worrying.

Also imagine that financial sector will be very very interested in this and will be able to obtain it via companies like BUPA.

Genuine medical research my arse.

What happens if eg I work for BUPA or a bank who buys this info, and thus my company becomes aware of my private medical history? That's not right.

from linky upthread:

"NHS England ? the body now in charge of commissioning primary care services across England ? will manage and use the information extracted by the Health and Social Care Information Centre for a range of purposes, none of which are to do with your direct medical care. These ?secondary uses? include patient-level tracking and monitoring, audit, business planning and contract management.

Though you may be told that any data passed on will be ?anonymised?, no guarantees can be given as to future re-identification ? indeed information is to be treated so that it can be linked to other data at patient level ? and NHS England has already been given legal exemptions to pass identifiable data across a range of regional processing centres, local area teams and commissioning bodies that came into force on April 1st 2013. The Health and Social Care Information Centre provides access to patient data, some in identifiable form, to a range of ?customers? including private companies."

I am honestly WTAF all over this.

info poster from NHS england

well that spells it all out

Parsing - I work in a large insurance company and all our staff have to sign declarations to say they won't look up family/friends' data, and there are extra declarations for the medical data we have access to. Also only a limited number of staff have access to medical data i.e. those who specifically need it to do their job - it isn't accessible to the rest of the staff. There are also declarations every time you sign in to computer programmes about our responsibility to use all data for appropriate company use only too. Could result in disciplinary etc.

There are confidentiality rules around medical data that apply across the board, not just to health care professionals.