Important information for NHS patients in England

[TerriDowty]

In the next few weeks, information that you share with your GP will be
extracted from surgery records and stored on centralised NHS systems
with your identifying details still attached. From there, it will be
made available for administrative, research and other purposes. The
government has claimed that your records will be ‘anonymised’ before
they are handed over to anyone else, but this is not true. There are
several circumstances in which data that identifies patients will be
made available, including to administrators.

Once your information has been uploaded, neither you nor your GP will
have any control over who it is shared with, who has access or what is
done with it. You will not be consulted, nor will you be asked for
consent. Uploads will take place automatically every month.

When you next visit your GP, you may see a small poster headed ‘how
information about you helps us to provide better care’. This is how NHS
England is explaining its plans to you and it is misleading. It does not
give you full details of the information that will be collected - which
includes your date of birth, postcode, ethnicity and NHS number - and it claims that information will not identify you.

Further down the poster you will see the words ‘you have a choice’. What
this actually means is: if you do not want personal and confidential
information to be taken from your medical record every month, the onus
is on you to opt out of the scheme. If you don’t do so, it will be
assumed that you consent to the extraction.

You can download an opt-out letter to complete and send to your GP from the medConfidential website:
medconfidential.org/how-to-opt-out/

You will also find more detailed information about the scheme – known as ‘care.data’ – on the website: medconfidential.org

Please tell all of your friends, family and colleagues about this
scheme, or forward this information to them. It's very important that
everyone knows they must take action if they don’t want their
information to leave their GP’s surgery.

[EnlightenedOwl]

Sometimes sharing information is a good thing. As long as the Data Protection Act isn't breached I can't see a problem

[TerriDowty]

That's exactly the problem. The BMA believes that GPs are in danger of breaching the Data Protection Act because so little information has been given to patients - see: www.ehi.co.uk/news/EHI/8907/care.data-publicity-%27not-adequate%27---gpc

To comply with DPA 'fair processing' requirements, it's really important that patients know they can opt out of data uploads, and that they have sufficient time to do so

[denialandpanic]

Is this related to government wish to share anonymous info with drug companies to aid research etc? I think this is a good thing.The Nhs has a treasure trove of info that e.g in my case might help shed light on auto immune disease, cancers etc. also I'm on a bunch of dangerous drugs, if I collapse on the street somewhere I would rather the local hospital could access my records than not.I won't be opting out.

[BoffinMum]

Surely though they can just contact your GP's surgery if they need to know something?

I worry about things like insurance companies having access to this data and refusing me insurance on trivial grounds, for example, or it being flogged for profit to the US.

[EnlightenedOwl]

denialandpanic - in much same position good point

[FavoriteThings]

I spoke to DH about this when the leaflet came out, and he said that everyone already knows everything about us anyway.

[PennySillin]

Great idea!

[BoffinMum]

TerriDowty, what is the worst that could happen?

[whatshallwedo]

Imo it is a good thing, as an earlier poster said it would be helpful if people could access their information in an emergency.

If it is 4am on a Saturday you don't stand much chance of there being someone at your gp surgery to give out the information.

Yes they could've handled it better by publicising it more snd maybe sending a letter out to all patients.

Surely if insurance companies somehow manage to gain access to the information they will be shooting themselves in the foot by refusing to insure people as I would imagine there are very few people who haven't had some kind of illness that could effect insurance.

[Minnieisthedevilmouse]

This has been going on for ages. I've had four sets of info sent to my house and I've moved three times!

You should be able to retrieve your info at any hospital in the country. I might live in kent but if in Glasgow and ill I want treatment according to my history and allergies etc.

In 2013 that should be possible!

[BeckAndCall]

I would want any doctor treating me or any member of my family to have at least the possibility of accessing my records in an emergency, no matter where I am. So I, for one, will be staying opted in.

We did have all the details sent to our home address some months ago with the option to opt out. This is not news.

[MinesAPintOfTea]

But you are relying on them finding the right person whilst you are unconscious, rater than someone with the same name: imagine being a "John Smith". I'd rather carry nok info and a now if medications etc in my purse.

[tribpot]

There was a thread on this recently.

To be clear - what is being described in the OP is not the Summary Care Record, which would be used directly in your own care, and for which there has been extensive consultation.

This is care.data which is about providing data for research and other secondary uses. I think one of the concerns is the extent to which patients will understand the difference between the two schemes; dissenting from one does not automatically dissent you from the other.

Btw there are no national schemes which allow data sharing between Glasgow and Kent. Both England and Scotland have emergency care records but they are not shareable across the border.

[TerriDowty]

TBH some of the comments demonstrate the problem: the lack of clear information that we're being given. There are several different and separate things going on. This one is not about the electronic patient record - the idea of having a single online record for all of your medical and social care notes that you and every practitioner can access. that is not going to come on stream before 2015 at the earliest.

This one is 'care.data'. It's data that will be extracted from your GP's records and held on the Health and Social Care Information Centre (HSCIC) systems with your identifiers still attached. It will be made available to administrators nationally and locally for various functions, still in identifiable form. It will also be given to researchers, although this will probably be 'anonymised' unless you are asked for consent.

The system is of no use to patients in terms of their direct care. Any hospital you visit won't be able to access it to find out your medical history, for instance. It is data/statistics pure and simple for NHS administrators, researchers and private companies that pass the application procedure.

Studies show that most patients would be happy to contribute to research if they are asked, and that's the key here: consent. They are your private medical records and a lot of people like to know that what they tell their GP is private unless they say otherwise. Currently medical confidentiality is very tight - the default position is that your GP keeps your records. The new default position is that excerpts from your records are transferred to HSCIC. The opt-out gives patients a chance to choose whether they want this to happen.

Hope that makes it a bit clearer.

[EnlightenedOwl]

Never heard a word of it from my GP surgery. I've checked out the website and it says the data capture is to enable the NHS to plan services and any identifying factors in the record are scrambled so you can't be identified?

[TerriDowty]

NHS England obtained a special exemption under s251 of the NHS Act 2006. This was to allow it to use confidential patient data (ie identifiable) for administrative purposes. They have just applied to have this extended for another year to October 2014 www.managementinpractice.com/editors-pick/nhs-england-requests-data-access-extension

[tribpot]

This is an article from the GP magazine Pulse on the planned anonymisation of the data.

[BitBewildered]

www.england.nhs.uk/ourwork/tsd/care-data/gp-toolkit/

www.england.nhs.uk/ourwork/tsd/data-info/

[TerriDowty]

This article from the GP magazine 'Pulse' is worth reading: 'GPs have eight weeks to inform all their patients that confidential data from their records will be shared outside the NHS' - www.pulsetoday.co.uk/your-practice/practice-topics/it/eight-weeks-to-inform-patients-their-data-is-going-to-be-harvested-gps-warned/20004562.article#.Uk6aXhVwbIU

[TerriDowty]

I've just seen the best 'fair processing' notice yet - prepared by a GP in Hampshire for all other GPs to use. It explains the care.data uploads so well that I really recommend a look: tinyurl.com/cdgenfact (it's a downloadable Word doc)

[TheABB]

My latest blog post folks on our medical records' sharing, if you're still interested, care.data has not gone away. This is 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

[LillyHammer]

Rather weirdly I was thinking about this issue this morning and wondering what had happened as it all seemed to go quiet. Thanks for resurrecting this.

[PausingFlatly]

Thanks for the update.

So they still haven't made it properly anonymous?

They're not having my data, then. Simples.

[caroldecker]

Yes it is properly anonymous to people outside the HSCIC - the admin staff at hospitals and GP's have access to your medical data today and these are far more likely to be people who know you and care about it

[PausingFlatly]

That Pulse article linked to is (rightly) concerned about identification because patients have rare conditions.

But it also contains the gem:
"Patient-identifiable data will be extracted from GP practices by the Health and Social Care Information Centre (HSICIC) using the GPES system, but will be anonmymised before being passed to NHS England."

So HSCIC - the organisation actually selling our data - will have the lot.

Which of course they want because this is a list of the "products" HSCIC were selling in 2013/14:

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.