Opting out of NHS health data sale

(124 Posts)
OddBoots Sun 18-Aug-13 20:44:17

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.

ParsingFancy Sun 18-Aug-13 20:53:15

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.

MrsTwgtwf Sun 18-Aug-13 20:57:07

Thanks, OddBoots, really appreciate that. thanks

frogwatcher42 Sun 18-Aug-13 20:59:18

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.

OddBoots Sun 18-Aug-13 21:05:12

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. hmm

ParsingFancy Sun 18-Aug-13 21:08:12

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

So, not anonymous by any measure.confused

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

frogwatcher42 Sun 18-Aug-13 21:14:27

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!

OddBoots Sun 18-Aug-13 21:19:11

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

ReginaPhilangie Sun 18-Aug-13 21:22:20

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!

frogwatcher42 Sun 18-Aug-13 21:25:53

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.

meditrina Sun 18-Aug-13 21:34:57

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?

frogwatcher42 Sun 18-Aug-13 21:54:24

Any GPs out there with any info???

HenWithAttitude Sun 18-Aug-13 22:11:48

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.

HenWithAttitude Sun 18-Aug-13 22:15:07

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

HenWithAttitude Sun 18-Aug-13 22:18:11

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

MrsTwgtwf Sun 18-Aug-13 23:15:20

Crazy, crazy, crazy.

TinyDiamond Sun 18-Aug-13 23:49:54

whoa

bemybebe Sun 18-Aug-13 23:58:02

subbing

frogwatcher42 Mon 19-Aug-13 09:30:25

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

OddBoots Mon 19-Aug-13 09:37:41

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."

shock

ParsingFancy Mon 19-Aug-13 11:52:55

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.

NiceTabard Mon 19-Aug-13 22:31:44

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.

NiceTabard Mon 19-Aug-13 22:34:44

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.

NiceTabard Mon 19-Aug-13 22:38:55

info poster from NHS england

well that spells it all out hmm

craftycottontail Mon 19-Aug-13 22:43:52

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.

craftycottontail Mon 19-Aug-13 22:46:03

(not saying any of this is right btw, just that there are consequences for misuse of data across the board, not just in health care)

NiceTabard Mon 19-Aug-13 22:55:26

IME data protection across the board in financial industry is not always adhered to as much as one might hope.

Sounds like your company is good, crafty smile

DogonBed Mon 19-Aug-13 22:56:36

Parsing - my point was not meant to minimise the issues around this but to give some perspective on other risks since I think people focus on HSCIC (could't remember their new name!) solely. I agree totally re disciplinary but I think that depends on staff being caught. There should be much tighter controls over who can access what.

NiceTabard - I read that paragraph differently. To me it's informing everyone how their data might be shared in accordance with DP act....and refers to a practice that has existed for a long time of billing services for the patients activity

pass identifiable data across a range of regional processing centres, local area teams and commissioning bodies The NHS is run as a business and all parts have to account for their costs and workload. In short this means for me e.g. detailing how many examinations of Type A I have done in month 3. The NHS no.s linked to these exams are shared in order that I cannot make it up - it provides auditable records. The no.s are shared with a secure network in the finance team. They are not passed outside of the the NHS. If a private company was contracted to provide an NHS service (e.g. BUPA) they would do the same to whoever was paying the bill

NiceTabard Mon 19-Aug-13 22:57:14

And no question that financial sector would love to get their hands on data this comprehensive and identifiable.

Non identifiability is a huge block when matching datasets across different lifestyle areas, and that is an area with a huge amount of interest at the mo.

This scheme gives me the heeby-jeebies.

DogonBed Mon 19-Aug-13 22:59:18

Just as an example of data sharing as I have described it doesn't say Dog has had a barium enema and then a colonoscopy

It's an excel sheet of NHS numbers against a particular 'tariff' for that cost centre

My number is 1234567890 and tariff 4 etc

NiceTabard Mon 19-Aug-13 23:01:27

Dogonbed is it current practice within the NHS to sell individually identifiable case notes on people who accredited organisations find interesting?

I am surprised about that, I would have thought that any current sharing of data outside the NHS was wholly anonymised. Even to the extent that certain info would be with-held if it could potentially be used to identify someone.

That is supposed to be the practice outside the NHS even when looking at pretty mundane information.

All of this is a huge shock to me.

TigerSwallowTail Mon 19-Aug-13 23:02:15

Thanks for sharing OP.

Do you know if this will affect Scotland? I can only see information about England in the links.

NiceTabard Mon 19-Aug-13 23:03:59

Dogon is this information that you are sharing / being shared with as a private sector employee outside the healthcare sector?

NiceTabard Mon 19-Aug-13 23:07:00

I can see that eg BUPA healthcare need to charge the NHS when they do work for them and bill accordingly.

And that NHS shares info within itself.

This is different though, selling info to others, not sharing it for reasons directly connected to your care.

DogonBed Mon 19-Aug-13 23:28:30

Dogonbed is it current practice within the NHS to sell individually identifiable case notes on people who accredited organisations find interesting? Not as far as I am aware

Dogon is this information that you are sharing / being shared with as a private sector employee outside the healthcare sector? No

This is different though, selling info to others, not sharing it for reasons directly connected to your care Yes the articles that OP has highlighted do suggest a worrying extension and it's appalling because it is driven by financial gain rather than care driven needs.

My previous post was saying how I interpreted the bit you CnPasted in the terms of admin to facilitate care rather than info sharing for purposes other than care

NiceTabard Mon 19-Aug-13 23:33:01

Ah right. Yes there is sharing at the mo but if you look at the link in the OP and others on the thread it seems to go much further than the (understandable) sharing of info that goes on at the mo.

I know that private sector esp financial services will be falling over themselves to get this data and it sounds all wrong.

Also this stuff about being able to track and identify individuals of interest. Does anyone know if that would extend to contacting people to see if they would be interested in assisting with research? Which is really really intrusive. Also contacting for sales purposes.

I'm really uncomfortable with all of this, from what I have read.

SunnyIntervals Mon 19-Aug-13 23:34:24

sad

ParsingFancy Tue 20-Aug-13 06:57:56

It's nice to hear your company comes down on individuals who look at data without authorisation, crafty, but I'm more worried about the "in order to do their job" bit.

Because the "job" itself might be detrimental to the individual.

Eg if prospective employers added "looking at family medical records" to their standard checks. Some go to the trouble of looking on Facebook etc, so it's a no brainer they would do this as well if they could. And claim it had nooooooothing to do with a candidate turning out to be "unsuitable".

NightFallsFast Tue 20-Aug-13 07:20:27

I'm a GP and have recieved absolutely no information about this from the NHS/government. Which is pretty usual, every few months there's a new 'thing' in the news and patients come into ask about it and we have nonmore info than is in the newspapers.

ParsingFancy Tue 20-Aug-13 08:07:51

Holy moley.shock

Well I wrote that about employment and went off to do something else - and fell across info about employment screening companies.

Take a look at this thread on MSE.

These screening companies are demanding proof of living at an address for 4 years before application for a job, proof of having discharged a CCJ 8 yrs previously, ringing round family and friends with detailed questionnaires. Another forum had someone having a job offer withdrawn because his college sent back different dates for his A level course.

Are these for jobs at MI6? No, for Virgin Media and Vodafone.

Sorry, that's a slight hijack. But I'm shockshockshock at the casual intrusiveness.

LegoCaltrops Tue 20-Aug-13 09:38:20

As far as I can see, the Telegraph article says "names and addresses, postcodes and date of birth will not be uploaded but gender and ethnicity will." I can't see anything that says that NHS numbers will be included either, although I may have missed that. I do agree it's a concern & will be asking my GP about opting out ASAP. It's got to get through parliament first though so hopefully it won't happen.

ParsingFancy Tue 20-Aug-13 09:52:46

From second link: "Each piece of information will made identifiable by uploading it along with your NHS number, date of birth, post code, gender and ethnicity."

And here's the HSCIC tariff list, detailing its products, eg "Bespoke extract – containing personal confidential data: A one-off extract tailored to the customer’s requirements of specified data fields containing patient identifiable data, sensitive data items or both."

Of course there may be restrictions - especially to begin with - on which sort of customer can buy which sort of data. But physically the HSCIC will have the lot, so it's a just a stroke of a pen to change who gets what.

ParsingFancy Tue 20-Aug-13 09:59:23

I don't know what this HSCIC product means: "Bespoke data linkage: A bespoke service linking one or more data sets held by the HSCIC to data supplied by the customer."

Sconset Tue 20-Aug-13 10:20:12

we did have something from our gp practice, but we were in the middle of moving, and it got filed in the 'important but not pressing' box, and not seen it since blush
It said something about april...

Solopower1 Tue 20-Aug-13 18:27:24

Thank you OP for starting this thread.

What this shows is an attitude that is really beginning to get to me. It's 'Because you use this service, we own your data'. You see it with cookies and on websites etc - 'if you want to access this site, you have to give us your name and address (at least)'.

Soon, very soon, the govt will be saying that it's in the national interests for them to have and store and sell our health data. Which will mean that anyone who objects is a traitor, and could have information that would be useful to terrorists. Then you'd get arrested at an airport, have all your documents confiscated and copied, and questioned about - oh I don't know - football or something. You'd be released a few hours later if you are lucky - after you've missed your flight/job interview/family gathering - and the police would keep tabs on you and your family for ever after.

Mark my words - it's the thin edge of the wedge and we're all doomed.

<Trundles off to make the tea>

Solopower1 Tue 20-Aug-13 18:30:03

Not that I'm making fun of this. I would definitely opt out if it happened in Scotland. The problem is that you really don't seem to be able to trust anyone to keep your details secret now, not with companies panting to get their grubby maulers on it - and willing to pay.

I think we should all be put in charge of our own data - by right. If someone wants it they should ask us if they can buy it. Cut out the middle man.

NiceTabard Tue 20-Aug-13 19:07:08

Parsingfancy it means that eg a financial services company or supermarket have a big database of existing customers, or people who have applied for stuff, and that can be linked with one or more of the medical datasets held by this company, thus giving a more detailed picture of the people. Often used for targeted selling purposes.

LegoCaltrops Tue 20-Aug-13 21:38:39

ParsingFancy thanks for that. I had thought that might be the case but missed that bit amongst all the links. DH was absolutely adamant this morning that the government couldn't possibly sell this sort of information, so I showed him the links. Then he said well it will never get through parliament (hope he is right). Then he said 'they definitely can't sell it with identifiable details like your address'. I just mentioned the latest link & he did that annoying grunt thing - you know where they know they have got it wrong but won't admit it. I bet he will let them sell his details now just to spite me...

5minutejourney Wed 21-Aug-13 11:08:51

it will never get through parliament
I'm sorry to say that it already has got through parliament.

The government is treating NHS patients like Facebook treats its users: They provide an ostensibly "free" service, and then sell our private details to the highest bidder behind our backs.

The Medconfidential site is a great resource. One of the people behind it is Ross Anderson, a security researcher at the University of Cambridge who has written a lot about these plans, e.g. here in the Guardian, and on this blog.

The supposed "anonymisation" of these records is a big lie. Effectively anonymising personal records, in a manner that they can't be re-identified, is actually a hard task, it's not just a matter of deleting name and address. For example, a well-known bit of research showed that 87 percent of all Americans could be uniquely identified using only three bits of information: ZIP code [postcode], birthdate, and sex. Basically, what will happen is that companies will buy access to these "anonymised" databases, cross-reference them with publicly available data (electoral register, data from facebook etc.) in order to re-identify people, and then spam us with targeted advertising based on our medical records.

Currently, this system doesn't apply to Scotland, but apparently there may be plans for something similar.

ParsingFancy Wed 21-Aug-13 16:19:23

NiceTabard, that's exactly what I hoped it didn't mean... angry

OddBoots Wed 21-Aug-13 17:45:00

I wonder if Mumsnet could arrange a webchat with someone in government would could/would answer our questions.

ParsingFancy Wed 21-Aug-13 18:04:12

Other than with "There there, it'll all be alright"?

Not a chance.

ParsingFancy Wed 21-Aug-13 18:08:11

I mean, they might do a webchat.

But really, what answers can they give?

"We've already done it."

"It'll all be fine."

"Shut up and stop complaining."

And special for extras: "Anyone who doesn't like it can just opt out. We'll presume your consent otherwise, and not publicise it's happening or what you can do. "

LaVolcan Tue 27-Aug-13 21:21:36

I think I opted out.
.......publicly available data (electoral register, data from facebook etc.) in order to re-identify people, and then spam us with targeted advertising based on our medical records.

Yes, it infuriates me that you can no longer consult the electoral roll in the Public Library - data protection given as the reason - but that any marketing company seems to be able to buy the information. It will be exactly the same with health records.

harbinger Wed 28-Aug-13 21:50:06

Is this about the letter sent out by GPs/County NHS that is described as a 'Summary Care Record' ?

If so, I think that that the wording is scaremongering. The powers that be, are, yet again banking (ha ha)/relying on inertia.

LaVolcan Thu 29-Aug-13 00:01:11

Yes, it was the 'Summary Care Record' and I thought the wording was scaremongering.

mirry2 Thu 29-Aug-13 00:34:22

Ha Ha How accurate are these records anyway? I've seen my sil's summary care record and it says she had a miscarriage last year. She's 66 years old grin

tribpot Thu 29-Aug-13 07:40:52

NHS England's Chief Data Officer has tweeted today that he's written to the Telegraph to confirm there is no plan to sell NHS data.

The information is not the same as the Summary Care Record. As noted in this guide for GPs from the BMA 'the SCR and care.data are different and therefore you cannot assume that an objection to one should automatically apply to the other'.

The SCR contains information about medicines, allergies and adverse reactions.

ParsingFancy Thu 29-Aug-13 10:06:16

He's wording it all very carefully, isn't he?

Going back to the Health and Social Care Information Centre (HSCIC) which will actually hold the data, here's some more from their Service Charges 2013/14.

"We do not charge for data itself but do apply charges to cover the costs of processing and delivering our service."

So Mr Lewis is correct that the data is not being paid for - but the service is.

Second, he slithers very quickly onto just anonymised data for medical analysts. Well and good, but not what we're concerned about. He also says "They are legally prohibited by the DPA from attempting to re-identify any patients". But it looks like customers can ask for the data already identified.

Herewith the full list of HSCIC products from that link:

Tabulation: A statistical table of aggregate data.

Bespoke extract - pseudonymised: A one-off extract tailored to the customer’s requirements of specified data fields containing no patient identifiable or sensitive data.

Bespoke extract - containing personal confidential data: A one-off extract tailored to the customer’s requirements of specified data fields containing patient identifiable data, sensitive data items or both.

Standard extract: Cumulative data for the financial year to date, delivered on a monthly basis via a subscription service. Users sign up to receive a year’s worth of data, delivered in monthly increments

Bespoke data linkage: A bespoke service linking one or more data sets held by the HSCIC to data supplied by the customer.

Patient status and/or tracking: Products designed to enable customers to receive one-off or on-going notifications of mortality and morbidity events affecting a specified patient cohort.

List cleaning: Validating demographic data to ensure it is accurate and improve linkage outcomes.

Prices for patient status and patient tracking include £2.26 for manual matching per record, and £3.78 for ad hoc matching per record. That's clearly about individual patients.

Interesting, a standard data set containing no personal confidential data is charged at £630, while a standard data set that does contain personal confidential data is £1094. Obviously the latter is more valuable to the customer - but if only the processing is being charged for, I wonder why removing personal data takes less processing than not removing it?

ParsingFancy Thu 29-Aug-13 10:46:03

By the way, some of the packages being sold by HSCIC include data from the Office of National Statistics (ONS), specifically the information on death certificates.

I was going to say, I can't see how that could be used for marketing - but sadly I can.

Anyhow, the ONS seem to be more picky in their release of data, as their requirements read, "In addition to the standard approvals required to access HSCIC products, approval to include ONS mortality data must be granted by ONS."

And give a list of three legal ways to get hold of their data.

However, the first is:

"1. Informed Patient Consent
You will need to have obtained the consent of the individuals to whom the data relates. You must supply copies of the materials used to gain patient consent such as consent forms and information literature such as leaflets and posters.

Yeah, well. Every form I fill in these days has something at the bottom saying, "And btw, do you give us permission to do what the hell we like with your data? If not, sod off, you can't use this service."

So I find that potentially quite weak. And god knows what HSCIC's controls are like if this is an additional one.

MollyBerry Thu 29-Aug-13 10:55:29

I don't quite understand what happens if you opt out? Your details just aren't available when you go to different services?

ParsingFancy Thu 29-Aug-13 11:05:48

<sigh>

I suppose like many things, it depends how it's done. I can see the Good Intentions at the medical research end. But I can also see the potential for it to go pear-shaped and harm individuals.

Particularly as, once the data's there, it's always just too tempting to extend the use.

ParsingFancy Thu 29-Aug-13 11:09:53

care.data is nothing to do with your personal benefit, Molly.

It's about someone using your medical record for other stuff. Which might be medical research. Or might not.

harbinger Mon 02-Sep-13 22:34:45

How would an 'opted out' person find out that details hadn't been sold.

Double blind

tribpot Wed 04-Sep-13 14:46:30

The GP magazine tweeted a link to this article today.

On the question of how you could know if your record had been shared, I believe if you opt out the record can't be extracted from the GP system.

Mrsdavidcaruso Thu 05-Sep-13 10:20:14

harbinger, I gave my GP a letter a couple of years ago downloaded from
N2ID opting out of both the national and the IOW local data base
IU gave them 3 read codes to put on my notes, these were

93c3 refused consent for upload for national shared electronic records and also 93c1 refused consent for upload for LOCAL shared electronic records. 9Nd1 no consent for electronic record sharing

Last time I went to the GP and my notes were on his screen there was a notification of the read codes.

I have sent him the opt out for this scheme so am assuming this will be added to my notes like last time

breadandbutterfly Mon 09-Sep-13 16:26:34

Thanks for OP - just in time, by the look of that article linked to in tribpot's post.

"GP practices in the north of England have been told to warn patients that information from their GP record will be extracted in two months time."

This government stinks.

WetAugust Mon 09-Sep-13 21:09:01

I had my letter today. 2 months to opt out or they assume consent.

All couched in a way that there's nothing to worry about as it's only shared locally, and it's for my benefit after all and if I don't allow it then people who treat me may not have the full picture they require.

breadandbutterfly Mon 09-Sep-13 22:43:03

Quick to send off the forms!!

Mrsdavidcaruso Tue 10-Sep-13 12:50:17

WetAugust are you sure the leaflet and letter you got was about Health and Social Care Information Centre. As highlighted in the OP. The scheme
being talked about is nothing to do with our health care and had nothing to do with any treatment you need in an emergency and at a GP/Hospital you may need to attend, the article makes that very clear.

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

There are also two schemes going on - one is the national summary care record scheme and also some Health Authorities have a LOCAL one (it's Vision 360 here on the island) both schemes have a warning on their blurb that people who treat you may not have the full picture they require, as both schemes are used ( so they say) primarily to have information they need to treat you if you are unconscious or attend a Hospital/clinic who will not have your paper records.

As you blurb mentions information only being shared locally I would suspect that what you are being asked to agree to is your own HA's local scheme and nothing to do with the Health and Social Care Information Centre download.

If you look at my post above I have shown the read codes, for National opt out, local opt out and full opt out

WetAugust Tue 10-Sep-13 13:09:07

Letter says 'Summary Care Record- your emergency care summary'

'The NHS in England is introducing the Summary Care Record, which will be used in emergency care. The record will contain information about any medicines you are taking, allergies...'

The letter came with a leaflet. It states 'This means they can provide you with safer care when your GP practice is closed or when you are away from home in another part of England [my bold]

So this is not just local.

I wasn't expecting it to be nationwide. I think I shall opt out.

Mrsdavidcaruso Tue 10-Sep-13 14:09:20

Yes the SCR scheme is National not just local.

tribpot Tue 10-Sep-13 21:39:35

The Summary Care Record is not the same as the care.data and opting out of one will not opt you out of the other automatically.

Mrsdavidcaruso Wed 25-Sep-13 21:35:53

Looks like they have had it put on hold
m.hsj.co.uk/5063570.article

Mrsdavidcaruso Wed 25-Sep-13 21:36:27

sorry link not working

Mrsdavidcaruso Wed 25-Sep-13 21:44:07

HSJ has learned the Information Commissioner’s Office met with NHS England last Thursday to discuss legal concerns amid mounting general practice opposition to the care.data project, particularly about the speed with which it was being implemented.

The ICO said it was concerned GPs were being given insufficient time to carry out a legal duty to inform patients about the programme, which will link patient data across different care settings, and allow them to opt out if they wish.

In an email seen by HSJ, the Health and Social Care Information Centre - which will run the database - wrote to GP “early adopter” practices on 29 August warning they had “approximately eight weeks” before it began extracting data.

However, NHS England has now agreed data will not be extracted until the ICO has approved its proposed timescales and it has also agreed to run a national awareness campaign.

One expert said it was “very unlikely” NHS England would be able to complete this process and start the extractions in line with the initial mid October timeframe indicated by the 29 August email.

It is understood the information centre is reviewing data collection methods, potentially further exacerbating any delay.

NHS England’s business plan for 2013-14 – 2015-16 said: “75 per cent of GP practices will be providing the full extract to care.data by September 2013.”

ICO group manager of public services Dawn Monaghan said she was “encouraged” following the meeting with NHS England.

She said: “NHS England has given us assurances that no data extraction will take place until we have agreed that the arrangements and timescales they are planning will give GPs enough time to carry out their legal duty.

“There has been a lot of confusion among GPs but it seems very unlikely the [information centre] will be able to start extracting data in the next four weeks as some GPs fear.”

tribpot Wed 16-Oct-13 22:16:19

It would appear that a wider public information campaign has now been ordered.

RedToothBrush Thu 02-Jan-14 16:38:24

I know this is an old thread, but I've just stumbled upon this from something mentioned in another thread and think it might be relevant to resurrect it, if they are sending out leaflets this month.

I'm horrified at the lack of publicity and lack of proper public debate over it as I've not heard a thing about it until today. Having seen the information that is supposed to be being sent out to the public about it this month, am concerned at just how transparent it is and how little information or reassurance the NHS is actually giving.

Having been so bothered about Bounty and its access to patients and their data in the past I find it concerning. All this business about explicit consent seems very worrying. When might you be approached, and by whom to give this information for example? A lot of the concerns about privacy and what constitutes informed consent that I had there, will rear their ugly heads again. Will people be mislead into consenting (in the same way as the Bounty Lady with her benefit form ruse) or worse still will people believe that they won't get certain treatments if they don't consent to sharing their data or approached at a time when they feel particularly vulnerable? Especially if its about getting, unusual or even experimental treatment. It has the potential to undermine equality in care if misused.

Thinking about it from the perspective of maternity wards because of my feelings about Bountry and the implication about it being an opt out system, it immediately stuck me about how on earth would you be able to protect your child's records, before they were able to get their hands on it? I'm not entirely sure you could from what I understand. Equally, it being an opt out system means that there are some potentially very vulnerable people out there who will have information about their health being shared. Given the above debate over whether a women who has just given birth might be deemed vulnerable for example, opens it up to a whole minefield of ethics. Are there going to be groups targeted by this as a result?

Whilst I like the idea of studying medical records; I am a supporter of what Ben Goldacre has been trying to do, I am deeply uncomfortable about how this appears to be being pushed through, the weaknesses in the system and the apparent lack of thought as to how it is going to work in practice. The potential benefit to us all is massive, but the potential threat I feel is perhaps too great at this stage.

I feel that when letters go out this month there are going to be three camps - the completely indifferent, the completely don't understand and the completely terrified. In terms of the third group I actually feel for GPs as I'm sure they are going to be bombarded by patients panicking about what is happening.

I wondered if any of the previous posters had changed their minds in someway, by perhaps felt more reassured/more worried since this thread was started and how other people felt about how it was being handled.

Ohfuckeryitsmarzipan Thu 02-Jan-14 16:52:41

I opted out when it was first touted to allow access to patients' records for nhs staff. (I didn't trust local surgery staff). I got the letter confirming it had gone through three years later...

Mrsdavidcaruso Fri 03-Jan-14 00:00:51

RedTooth is was GPS who initially wanted patients to be warned and have the right to opt put in fact they are being encouraged to do so
www.pulsetoday.co.uk/your-practice/practice-topics/it/gps-urged-to-proactively-support-nhs-data-sharing-publicity-campaign-starting-next-week/20005445.article#.UsX9DihQZ54

So they should be ready for patients 'panicking'

RedToothBrush Fri 03-Jan-14 16:37:00

Our GP didn't have a clue yesterday and certainly did not seem remotely prepared.

tribpot Sat 11-Jan-14 19:20:40

marzipan, as mentioned further up in the thread, opting out of the Summary Care Record (which is what you were probably told about 3 years ago) does not automatically opt you out of care.data. You need to opt out again.

Skiskiskis Sun 12-Jan-14 22:13:14

I started another thread on this after receiving the NHS paperwork and not understanding it. The receptionists at my GP's clinic didn't know either!

I'm certainly going to opt out but does anyone know how the opt out request can be confirmed by me?

As I said the receptionist staff at the GP clinic kept arguing with me about their levels of confidentiality blah blah blah and couldn't understand that the leaflet posted through my door suggested there was more to it.

WaitingForPeterWimseyNow Sun 12-Jan-14 22:34:40

Must remember to opt out for dc as well!!

fairbalance Mon 13-Jan-14 11:52:36

See Dr Neil Bhatia a GP in Yately Hants web site for information on this latest scheme it is a separate opt out to the Summary Care Record so you have to opt out twice. www.care-data.info.

bryte Fri 17-Jan-14 14:04:46

There's an opt out form provided here by MedConfidential

bryte Fri 17-Jan-14 14:14:03

Has anyone else received their 'information' leaflet and was it buried within a large pile of junk mail like mine was?

I'm astounded by the lack of debate in the news about this. I'd like to make people I know more aware about the potential issues of not-opting out so they can make a properly informed consent but I cannot find any well-written articles (suitably condensed) or information online that I can present them with.

Mrsdavidcaruso Sat 18-Jan-14 07:39:23

My GP confirmed yesterday that that all my read codes were in my notes and that I have opted out of SCR, local data base (vision 360) and the data sharing scheme.

Bryte check the no2ids forum there is a lot of info inc links to articles from Pulse and other sources

bryte Sat 18-Jan-14 11:19:37

Thank you. I will do that.

TheABB Wed 29-Jan-14 00:48:23

Mums, we need to get our heads round this programme. Every one of us and ours kids health data from GPs will be uploaded to this central Information Centre starting soon - and if we disagree, we have only very limited objections we can make. I've been looking at it closely for about 5 months, as I've 3 under twelve and I want to keep their health records confidential. I called the info telephone last week (on the bottom of the leaflet linked below). If you want to know more, they recommend we call that 0300 456 3531 number. But when I tried they only know as much as they have been told and one read off the website to me. Nice, professional, but not as knowledgeable as I wanted. If you still need more answers I'll help any way I can, or can point to the other websites and more information. I've read almost all I could find about it in recent weeks. " care.data "

ico.org.uk/news/blog/2014/~/media/images/content/ico-infographic.pdf

The public leaflets should have been delivered in the North first, and are not yet arrived down South. Look out for them. But they don't tell you very much. This is more complete - a brand new for GPs FAQs leaflet, which is a completely different picture of objection and requirements, compared with the past version.
www.england.nhs.uk/wp-content/uploads/2014/01/cd-gp-faqs.pdf

Official door drop flyer: www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Documents/NHS_Door_drop_26-11-13.pdf

Official page: www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/care-data.aspx

important: ico.org.uk/news/blog/2014/NHS-patient-information-and-the-Data-Protection-Act

We're expected to sign away our kids' identifiable data privacy for their lifetime by assumed consent & DPA '98 workaround? I don't think this works well. What do you think and what would you do?

Considering Snowden & US/UK data governance, I just don't think any agreements about data sharing with the US govt bodes well for confidentiality or for a state NHS - the data of our kids, the sick and vulnerable is being treated like a commodity like any other. Commercial companies in future expect to use Big Data, as the UK healthcare market is "primed" for US services and providers over here. Ref: www.healthit.gov/sites/default/files/hhsnhs_mou_final_jan_21.pdf. "…open data initiatives, advancing Health IT adoption, and priming their respective markets for innovative new Health IT products and services."

Can we tell family and friends to get informed? But perhaps this is not enough. Are you happy our data will be included at all? There's no opt out of pseudonymised data sharing, but I don't know which items are left on and which are scrambled in that option. We can only object from them sharing fully identifiable data. Not opt out from the whole project. GPs are legally bound by the Secretary of State to release it. If you want them to use it as they govern and under their confidentiality rules with researchers and third parties, do nothing.

If you want to restrict some identifiable sharing, contact your GP practice/reception.

TheABB Wed 29-Jan-14 00:53:12

https://twitter.com/TheABB

Lazyjaney Wed 29-Jan-14 01:38:13

Glad this has been resurrected, this is a disaster waiting to happen. It will be privatised profits, public bearing the costs all over again, with nice sidelines in identity theft and various other hackings.

Most people just dont realise what we are walking in to.

TheABB Wed 29-Jan-14 14:42:00

@LazeyJaney - so what can we best do, do you think? In my opinion, our GP confidentiality is the foundation of good primary care and ensures people especially teens, or those with communicable but sensitive conditions have confidence to get help or support. If they fear their doctor or others may be required to share that info, we may have all sorts of problems in store. I believe that political ideology is putting commissioning ahead of care. Front line clinicians will not get to see this data. There are really good reasons for having aggregated and anonymised data for trend spotting and risk prediction, and analysing treatment vs outcome, but I don't believe it should need personally identifiable data?

talulahbelle Wed 29-Jan-14 17:55:23

I am going to opt out as much as I can, I was totally unaware of this until the form arrived today - luckily I read everything and then decided to research further.

Link to a pro forma that can be used for opting out (I found the link on pulse, sorry if it's already been linked to)

https://dl.dropboxusercontent.com/u/14156524/caredata_trifold.pdf

TheABB Fri 31-Jan-14 17:54:25

Are you willing to ask for more information? I wasn't sure where to put this, so if it's misplaced I am sure it will get moved. It's hard to ask fro help on your own but was hoping that together we could campaign for more information to know what the bigger picture is all about - if we know what the future NHS will look like, we'll better understand why they want the data now and how it will be used in future.

http://www.mumsnet.com/Talk/am_i_being_unreasonable/1981636-Not-to-want-the-NHS-to-share-my-confidential-medical-records?watched=1&msgid=44748417#44748417

TheABB Fri 31-Jan-14 17:56:18

This link even! http://www.mumsnet.com/Talk/mumsnet_campaigns/1983765-Who-will-own-our-Health-data-in-a-future-NHS

Twitter: TheABB

tribpot Fri 31-Jan-14 18:26:47

Ben Goldacre is taking an interest in this issue, as he mentioned on Twitter recently.

HollyHB Sat 08-Feb-14 03:43:45

More in today's Guardian.
Police will have 'backdoor' access to health records despite opt-out, says MP
www.theguardian.com/society/2014/feb/06/police-backdoor-access-nhs-health-records?commentpage=1

The result of systematically destroying public trust in the NHS, the LAs and the Courts is that people will simply start keeping themselves and their children away from doctors. And others who can't be trusted. What a society it has become!

We need clinics where people can get health advice without giving up anonymity.

wetaugust Mon 10-Feb-14 13:03:43

This was discussed on Radio 5 last night.

The proposals are outrageous.

We opted out today.

TheABB Mon 10-Feb-14 19:39:03

http://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:

http://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

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

(26 posts)

CFSKate Mon 24-Feb-14 09:30:31
umpity Mon 24-Feb-14 11:42:39

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

MyCatIsFat Mon 24-Feb-14 17:25:38

..and a deafening silence in the media confused

tryingreallytrying Mon 24-Feb-14 19:59:54

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. sad

MyCatIsFat Mon 24-Feb-14 20:12:25

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

tryingreallytrying Mon 24-Feb-14 20:14:19
tryingreallytrying Mon 24-Feb-14 20:48:31
tryingreallytrying Mon 24-Feb-14 20:49:25

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

tryingreallytrying Mon 24-Feb-14 20:50:11
tribpot Mon 24-Feb-14 22:15:23

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.

Mrsdavidcaruso Tue 25-Feb-14 15:48:25

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 Tue 25-Feb-14 21:51:05

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

Ben Goldacre was live tweeting it and is not impressed.

tryingreallytrying Tue 25-Feb-14 23:05:48

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.

Mrsdavidcaruso Tue 25-Feb-14 23:10:27

Looks like a lot of people are not impressed

tribpot Tue 25-Feb-14 23:15:41

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 Wed 26-Feb-14 00:26:59

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 Wed 26-Feb-14 10:59:29
Mrsdavidcaruso Wed 26-Feb-14 11:58:45

tribot I have seen that its brilliant

tryingreallytrying Thu 27-Feb-14 11:27:37

grin grin grin

Brilliant.

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

Oh so true.

ParsingFancy Thu 03-Apr-14 19:49:59

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.

TheABB Sun 08-Jun-14 20:36:23

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]

TheABB Thu 04-Sep-14 02:16:37

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

tribpot Mon 08-Sep-14 23:33:00

These slides were tweeted today.

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