As of 18th February, care.data uploads have been delayed for a further 6 months until September 2014, except for a number of ‘pilot’ practices
– locations as yet unknown – which may begin uploading patient data before then. see full article here...
Over 130,000 of us voted to opt out of Care.data because of concerns about our privacy and our data being used by private companies. Within hours of the vote, NHS England staff rushed to the 38 Degrees office for an urgent meeting to “understand our concerns”. During the meeting, it was announced they would postpone their plans.
This climbdown is proof that people power can make a difference in the fight against NHS privatisation. It comes after a wave of pressure from 38 Degrees members, along with organisations like SumOfUs and medConfidential.
NHS England have said they’ll now try to ‘build public confidence in the system’. We can show them that there’s only one way to win us over: rule out private companies making money from our medical records, and protect our privacy.
Comprehensive info on care-data here.....
if you have any concerns – and the performance of Tim Kelsey (NHS England), Max Jones (HSCIC) and the Under-Secretary of State for Health in front of the Committee yesterday was less than confidence-inspiring – then opt out now. And don’t forget your kids!
Opt-out form here.....
care.data in a nutshell....
- care.data is not anonymous
- Sensitive and identifiable information is going be extracted from your GP records and uploaded to Health and Social Care Information Centre (HSCIC) databases
- Sensitive and identifiable information has already been extracted, and will continue to be extracted from your hospital records and uploaded to HSCIC databases
- You will not be asked for your explicit permission or consent before these extractions take place
- The two sets of your information will be combined into one database and subsequently released, in various formats, to organisations within and outside of the NHS
- You will not be asked for your explicit permission or consent before your uploaded data is released to these organisations
- The information is not going to be available to doctors and nurses, and so will not be used to provide direct medical care
- The HSCIC will keep your uploaded information indefinitely - it will never be deleted, but continuously added to
- Information about you will not be released or sold in just an aggregate (unidentifiable) format
- You cannot control when, to whom, for what purposes, and what specific information uploaded from your GP record the HSCIC releases about you
- You cannot specify that your information is only used for the purpose of medical research
- Opting out, with either or both of the opt-out options, is the only way to have any control at over how the HSCIC use, or will use, your personal data
- Your GP surgery cannot stop this extraction - but you, as an individual, can
- You can prevent the extraction and uploading of any data from your GP record to the HSCIC by asking your GP surgery to put a special code in your GP records
- You can prevent the release of your clearly identifiable data from the HSCIC by asking your GP surgery to put an additional special code in your GP records
- If you opt-out of care.data (now), you can opt back in at any time in the future
There is no deadline by which you must opt back in by
You can control your GP records - if you know how.
See this chart (tinyurl.com/mygprecords) for guidance, and contact your GP surgery if you need further information about any of the data flows.