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.

[OddBoots]

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

[ParsingFancy]

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

Not a chance.

[ParsingFancy]

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]

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]

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]

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

[mirry2]

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

[tribpot]

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]

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]

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]

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

[ParsingFancy]

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]

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]

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

Double blind

[tribpot]

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]

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]

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]

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]

Quick to send off the forms!!

[Mrsdavidcaruso]

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]

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]

Yes the SCR scheme is National not just local.

[tribpot]

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]

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

[Mrsdavidcaruso]

sorry link not working