You may have (I have) received a flyer about this – or picked up something from your GP surgery. Publicity blurb says:
NHS DATA USE PROGRAMME ROLLS OUT ACROSS EAST OF ENGLAND
A new system to collect information from patient’s medical records that will help to provide a ‘joined-up’ picture of the country’s health and social care needs is currently underway in the region.
Every week, the NHS collects millions of pieces of data about the nature of people’s health, the way services are accessed and the types of treatments provided to support our nations’ health and wellbeing.
Care.data is being delivered by the Health and Social Care Information Centre (HSCIC) and NHS England to bring this information together so the NHS can use it to:
- better understand and improve the health of the nation;
- find ways of targeting, preventing, treating and managing illness and disease; and
- better anticipate future need for services and plan and commission accordingly.
The information gathered – date of birth, full postcode, NHS Number and gender – will be used to link patient records in a secure system, managed by the HSCIC. Confidentiality is paramount and if this information is used, it will not contain information that identifies individuals. The type of information shared, and how it is shared, is controlled by law and strict confidentiality rules.
NHS England is committed to supporting patients in making informed decisions about their healthcare and how their information is used. The awareness campaign explains what information will be used as part of care.data and makes it clear how people can opt out if they choose to do so.
NHS Choices already contains a wide range of information about care.data on its website – www.nhs.uk/caredata – with sections for both health professionals and patients/the public.
The first data extraction takes place in March 2014.
You wouldn’t expect them to say anything else – but others are!
There are a number of organisations / people / GPs arguing that we should opt out of the scheme. Note this is nothing to do with summary care data – the data being looked at here is for research purposes.
Here are a couple if sites arguing for opting out for now. NB You can opt in, but once your data is submitted you can’t recover it, or get it deleted – so opting out later doesn’t help!
http://www.care-data.info/ (by a GP / Caldicott Guardian) – note that each practice (etc) will be required to have a Caldicott Guardian – “each organisation to designate a senior medical officer to oversee all procedures affecting access to person-identifiable health data”
And here’s a story about a GP practice prepared to break the law around the issue:
Of course, there are others arguing the reverse – health charities reported in Computing arguing for people not to opt out.
What am I going to do? I’ve at least downloaded the form to opt out – given the history of major (government) projects I guess my personal details will get out there. But, of course, the world (or even the www, try pipl) knows a great deal about me already, so does it matter?
“Two wrongs don’t make a right” – and yes, it does matter. The Government, and its agencies, ought to be getting these things right – if my personal information should be confidential that is the way it should stay – guaranteed – not “best endeavours”!
http://southcambridgeshire.shapeyourplace.org/nhs-leaflet/ reports the advice from the George Clare surgery (Chatteris) to it’s PPG recommending that all patients opt out of the scheme.
http://www.theguardian.com/society/2014/jan/19/nhs-patient-data-available-companies-buy says: Privacy experts warn there will be no way for public to work out who has their medical records or how they are using it, and then adds: Mark Davies, the Health and Social Care Information Centre’s public assurance director, told the Guardian there was a “small risk” certain patients could be “re-identified”
http://www.telegraph.co.uk/health/healthnews/10595743/Four-in-10-GPs-to-opt-out-of-NHS-database.html The survey of nearly 400 GPs conducted this week found the profession split over whether to support the care.data scheme, with 41 per cent saying they intend to opt-out, 43 per cent saying they would not opt-out and 16 per cent undecided.