This is a summary from a website set up to advise the public about the implications of the care data programme:
"- So what has changed?
The government has passed legislation and the NHS Constitution has been rewritten so that confidential information will be extracted from your GP-held record in identifiable form, and no longer be under the control of the doctor you shared it with.
Until recently the default position was that your medical notes were confidential and remained within your GP’s surgery systems. This is no longer true. The new default is that, on the direction of NHS England, excerpts from your records will be uploaded to the new Health and Social Care Information Centre (HSCIC) unless you say otherwise.
- When is this happening?
Pilots of the new scheme – called ‘care.data’ – took place in around 75 GP practices in England. The original plan was to begin extracting data in the Autumn of 2013, but after pressure from GP leaders, medConfidential and others, NHS England bowed to confidentiality concerns around care.data, agreed to mount a publicity campaign and delayed the first extractions until Spring 2014.
HSCIC will start extracting information from GP practices in England – not Scotland, Wales or Northern Ireland – in March 2014. We are led to believe that the first extraction will be around 1% of the population, the second extraction in April will be 10% and the third in May will extract information from 100% of the population. Data is expected to flow to HSCIC ‘customers’ a couple of months later.
- What information will be taken from my medical records?
Every month, details of your diagnoses, referrals, health conditions and treatments plus ‘lifestyle’ information such as smoking / drinking habits and whether you are obese will be extracted. They will be uploaded to HSCIC together with your NHS number, date of birth, postcode, gender and ethnicity.
- But they say my data will be ‘anonymised’…
First of all, the information will not be anonymised when it leaves your GP’s surgery; it will be extracted with your personal details still attached. HSCIC will then determine which parts of your information it will share with others and requests for identifiable data will be passed on to another body, the Confidentiality Advisory Group based in the Health Research Authority. Don’t be fooled by the word ‘research’ in the name, though – NHS England, for example, has already been granted a legal exemption to pass identifiable data about patients between various commissioning bodies.
Even if your information is passed on or published without identifying details, your anonymity can never be guaranteed. Re-identification of apparently ‘anonymous’ data can be surprisingly easy, and the way HSCIC will treat the data is specifically designed to allow it to link and match records at patient level.
- How will my information be used?
Aside from the de-identified data that HSCIC intends to publish, your information may also be shared with or sold to researchers and private companies; registered ‘customers’ pay extra if they receive data in identifiable form. This will be done without your knowledge and you will have no control over who receives it.
Identifiable data will also be passed to regional processing centres, local Clinical Commissioning Groups and the units that support them – which include private companies. These commissioning bodies will use your information for a number of administrative purposes, including audit and monitoring, service planning and targeting, validating invoices and to provide evidence about the effectiveness of services.
- Is it just my GP-held records that will be treated this way?
No. Extracting GP records is only the first step in a far bigger programme. Hospitals have been told to be ready for similar uploads from 2014, and social services from 2015 – this is, after all, the ‘Health and Social Care Information Centre’. Ultimately information about all of the medical and social care you receive will be collected and stored on the HSCIC system.
- Will I be asked for permission?
No, and they’re not intending to tell you directly either. In fact – though it finally conceded to run a junk mail door drop – NHS England initially ruled out running any sort of national publicity campaign. Instead they tried getting GPs to put up posters in their receptions or notices in newsletters.
- What can I do?
The good news is that you can opt out. But if you don’t want your confidential information collected or passed on by HSCIC, the onus is on you to tell your GP. Under the new legislation, GPs will not be able to stop your information being released to HSCIC unless you specifically tell them not to upload it and to make an official note of this in your record.
- Will opting out affect my care in any way?
No. Opting out of these ‘secondary uses’ of your data will not affect your direct medical care. Nor should it affect the way your GP is paid for providing you with care; that is done with aggregate, non-identifiable data.
- Why are there two opt out codes in the letter?
As we said, extracting GP records is only the first step in a much wider programme. Information about you may be collected by HSCIC from sources other than your GP, e.g. from hospitals or clinics. This information will also be identifiable, and may be linked to other data it holds or passed to other agencies and third parties.
If you want to stop HSCIC from passing on your confidential information in identifiable form to any other bodies, including private companies, you have to tell your GP to add that opt out code to your record as well.
- Isn’t this the same as the Summary Care Record (SCR)?
No, but it does cover some of the same data, e.g. your prescriptions. The SCR was a far more limited collection, whereas this new scheme –known as ‘care.data’ – involves a wholesale, monthly extraction of identifiable information about every patient in England.
- I’ve already opted out of SCR. Do I need to do anything?
Yes, you must opt out all over again. Though the Secretary of State for Health, Jeremy Hunt, originally stated that existing opt outs “would be respected”, there has since been a U-turn and opt outs for SCR will not be carried over to this new scheme.
- What about my data being used for medical research?
In December 2011, the Prime Minister promised an opt out for those who specifically didn’t want their information to be used for medical research . This has not happened. Your only option at this point is therefore to opt out altogether from uploads to and passing on from HSCIC or accept that your information will be used for a wide range of purposes, only some of which are to do with medical research." |
Any medical professionals have a _iewpoint on this?
Thanks i shall try again.
As for the health board, after some "better ask my boss" stuff I was told it didn't apply to this part of Wales.......yet!
