UPDATE 31/1/16: we are waiting to hear that the consent codes have been extracted and honoured for hospital (HSCIC) data. GPs will have honoured your request since you handed in your form, possibly several years ago. We are working to ensure all opt outs are honoured throughout the NHS. The promise that this will not affect your direct care will also continue to be true.
A second cock-up has been uncovered, which potentially affects the whole country. care.data itself is currently limited to just four ‘pathfinder’ areas – and no data has been extracted yet. If you would like to opt out, forms to do so are here. We are are working to ensure that NHS England honours all opt outs and that its promise that this will not affect your direct care is true.
UPDATE 23/1/15: If you opted out last year, your direct care has not been affected. As of now, none of the opt out codes have been extracted and the care.data programme has taken no information from your GP’s systems.
We learnt from a letter we got sight of minutes before we gave evidence to the Health Select Committee on 21 January that, due to a mistake with the ‘Type 2’ (9Nu4) objection code, everyone who opted out with it will need to be contacted to confirm the details of a new, as yet unspecified, arrangement. Opting out now should mean you are contacted in that group.
But because the codes have not been extracted, HSCIC has no way to know whose data to prevent passing on to its customers. Data releases resumed last summer; you can see the organisations which have received data in HSCIC’s quarterly Data Release Register.
Unfortunately at this point no-one, including HSCIC itself, can tell you if your data has been released – which is one example of why we’ve been pushing for personalised Data Usage Reports. With those in place, you would know.
We are working hard to ensure that your opt out is honoured, and that it does what you were told it would do – by us, and by NHS England.
If you want to be kept up to date with what’s going on, and with facts you can act on:
The pathfinder areas announced on 7 October 2014 are:
- Leeds (3 CCGs: West / North / South and East)
- Blackburn with Darwen CCG
- West Hampshire CCG
- Somerset CCG
NHS England has not yet published a list of individual GP practices that are involved.
UPDATE 23/1/15: We understand from evidence given to the Health Select Committee on 21 January 2015 that about 80 practices in total had signed up at that point. No list has yet been published.
If you do have any concerns about care.data, and if you haven’t done so already, our advice continues to be to opt out now. The problem with the ‘Type 2’ (9Nu4) objection code means that it will not be acted upon straight away, but if you have it applied to your GP record you should be contacted with details of the new arrangement in due course.
The existing ‘Type 1’ (9Nu0) objection code will still work, so your information will not be extracted from your GP record when care.data extractions begin.
The Secretary of State has promised that all patient objections will be respected, and we have no reason at this point to assume they will not be honoured – albeit much later than patients have every right to expect.
If you opted out of care.data last year and had the objection codes added to your GP record, you do not have to opt out again. You should be contacted in due course about the arrangements for your ‘Type 2’ (9Nu4) objection.
The basis of the care.data programme remains unchanged – identifiable medical information will be extracted from the GP record of every man, woman and child in England; this data will be centralised, linked with information taken from other parts of the NHS and made available to an open-ended array of organisations and companies for ill-defined purposes.
Opt out form
All you need do is write a letter to your GP or download a simple form (link below) instructing your doctor to opt you out, which you can fill in and post or drop into your surgery reception for their attention.
If you have any problems getting your surgery to understand what you are opting out of, or if they hand you an opt out form for something else, e.g. the Summary Care Record, then let us know using our handy formFix tool – you tell us, and we’ll send them some details.
Dr Neil Bhatia, a Hampshire GP, has written the text of a leaflet with a tear-off form that you can use for yourself, your minor children (i.e. children below the age of consent – older children must opt out for themselves) and anyone for whom you hold lasting power of attorney:
Please do take a few moments to e-mail this PDF to your family, friends and colleagues, or send them the link to this page – www.medconfidential.org/how-to-opt-out – or share it on social media. You might even print off copies of the form (which conveniently prints double-sided and folds to fit in a DL envelope) to give to others who may not have heard about what’s going to happen to their medical records, and won’t know what they can do.
Dr Bhatia also provides more information on the care.data scheme on his website: www.care-data.info
Opt out letter
If you do not want confidential, identifiable information from your medical records to be uploaded and passed on for purposes other than your medical care you can opt out by telling your doctor. You don’t have to book an appointment to do this, you can simply send a letter.
As an alternative to the form above, we provide a letter in Microsoft Word (.doc) format, editable Rich Text (.rtf) format and as an Adobe Acrobat (.pdf) PDF for you to fill in and send to your doctor. We have updated this letter so that you can use it to opt out your children or adults for whom you are legally responsible as well.
Simply click on one of the links below to download and print off a copy, fill in your details and the details of your minor children (i.e. children below the age of consent – older children must opt out for themselves) and/or anyone for whom you hold lasting power of attorney, sign it and send it to your GP:
Opting out will not affect the care you receive [UPDATE 23/1/15: we do not yet know what the alternative arrangement for ‘Type 2’ objections will be, but it is inconceivable that your direct care would be allowed to be affected] and you can change your mind at any point and opt back in if you like. Opting out will not prevent your GP from being paid for care provided – information needed for those payments should only leave the practice in summary (i.e. anonymous) form.
If you have any specific concerns, we recommend you speak with your GP.
As you will see from the letter, there are TWO codes that your doctor will need to add to your record – one to prevent your information being uploaded from the GP practice, and one to stop the Health and Social Care Information Centre from passing on any identifiable data it gathers from any other care context, e.g. hospital records or clinics. [UPDATE 23/1/15: The problem is with this second code, but the HSCIC has committed to writing to every patient affected to confirm the details of the new, as yet unspecified, arrangement.]
What’s this all about?
Under changes to legislation, your GP can now be required to upload personal and identifiable information from the medical record of every patient in England to central servers at the Health and Social Care Information Centre (HSCIC). Once this information leaves your GP practice, your doctor will no longer be in control of what data is passed on or to whom.
This information will include diagnoses, investigations, treatments and referrals as well as other things you may have shared with your doctor including your weight, alcohol consumption, smoking and family history. Each piece of information will be identifiable as it will be uploaded with your NHS number, date of birth, post code, gender and ethnicity.
NHS England – the body now in charge of commissioning primary care services across England – will manage and use the information extracted by HSCIC for a range of purposes, none of which are to do with your direct medical care. Though official leaflets talk a great deal about research, the ‘secondary uses’ for which your data may be used include patient-level tracking and monitoring, audit, business planning and contract management.
In September 2013, NHS England applied to pass on your information in a form it admits “could be considered identifiable if published” to a whole range of organisations that include – but are not limited to – research bodies, universities, think tanks, “information intermediaries”, charities and private companies.
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. HSCIC already provides access to patient data, some in identifiable form, to a range of ‘customers’ outside the NHS, including private companies.
What happened last year?
In January 2014, NHS England sent out a leaflet entitled Better information means better care (2MB PDF) via junk mail. It was not addressed directly to you as a patient and it deliberately didn’t include an opt-out form. The leaflet said you should “speak to your GP practice” if you wanted to opt out. This was misleading and could have wasted your time and potentially wasted valuable GP appointment time as well.
You can read more about how we had to get the opt outs fixed, but on 25 February 2014 the Secretary of State for Health confirmed to us in writing the operation of the opt out codes. HSCIC has published a page explaining exactly how they will work:
N.B. As well as opting out, you may want to write to your MP about this. The Health Select Committee is conducting an inquiry into care.data and the handling of NHS patients’ data, and medConfidential gave oral evidence to its first and fourth hearings.