Computer boffin on NHS Spine: Get out while you can
Summary Care Record summarily slammed
A leading computer scientist has sounded a warning over an NHS data collection plan, urging patients to opt out.
The Summary Care Record (SCR) scheme will make outlines of medical records available to hundreds of thousands of NHS staff in England. The idea is to provide doctors and nurses in England with easier access to information on patients registered with other doctors without having to call or fax their main medics.
But the approach is fraught with privacy pitfalls while offering questionable clinical benefits, according to Professor Ross Anderson of Cambridge University.
Anderson notes that a similar system was abused when it was introduced in Scotland by a rogue medic who snooped into the medical records of health records of prime minister Gordon Brown and SNP leader Alex Salmond. The doctor concerned was spared prosecution for hacking because of his own medical problems.
The SCR scheme is billed as a means for medical staff to have easier access to information on whether patients are allergic to drugs such as penicillin, but even this limited ambition is liable to fail. "It won’t be available abroad (or even in Scotland) so if you are allergic to penicillin you’d better keep on wearing your dogtag," Anderson argues.
The roll-out of summary care record (“The Spine”) in London has been accompanied by efforts to educate patients about opting out of the scheme via posters and leaflets in general surgeries. By default, patients will be enrolled in the scheme.
Anderson welcomed this action by doctors' organisations while criticising Labour plans to talk up the supposed benefits of the scheme, which he views as one move towards the bigger threat of a database state. Both the main opposition parties, Conservatives and LibDem, oppose the scheme.
A Department of Health spokesman sent us the following:
Patients have at least twelve weeks to decide if they want to have a Summary Care Record and, together with GPs, have had several sources of information on how the records work and the opt-out process made available to them. All patients have the right to opt out and they can also change their minds at any time.
To date, over six million patients have been sent standardised public information packs about Summary Care Records through regional Public Information Programmes. GPs can also direct patients with further enquiries to the dedicated NHS Care Records Service Information Line and the NHS Care Records Service website http://www.nhscarerecords.nhs.uk/Standardised information packs for GPs are also available on the Connecting for Health website.
The patient and GP packs are being supplemented with local awareness and engagement activities such as drop-in sessions and local media coverage. Emerging benefits in Out of Hours and End of Life care in early adopter areas are increasingly winning the support of clinicians.
As regards timescales, this will largely depend on PCT readiness. Roll-out of Summary Care Records is gathering pace. As of 19th February 2010, 1,190,418 Summary Care Records had been created and over 6,000,000 patients had been written to as part of a Public Information Programme.
The opt-out rate remains consistently below 1%.
Approximately 80% of GP practices now have a compliant SCR GP system. The NHS Informatics Planning 2010/11 states that PCTs, as commissioners, should agree a timeline with their SHA for the creation of SCRs at all SCR-compliant GP practices in the financial year 2010/11. It should be stressed that Summary Care Records will not be created immediately after the 12-week period in which patients have to make a decision, but over the timeframe outlined above.
what about the secondary use of all these records
When this was explained to me a few years back that this was going ahead, I immediately requested my details to be opted out.
My biggest scare was that I had inside access and "tested" a system to see how well the security was implemented.
I was able to do a search for people with same forename and surname across the country, and get all their d.o.b, address and nhs number and then do a print screen.
None of this was recorded or audited, and when I took this information to someone in authority i was informed the auditing starts once a name has been selected.
This is just plain wrong, and makes it easy for anyone to obtain the address details of anyone in the country.
Don't Overlook Detailed Care Records!
There aren't just Summary Care Records - out of which you can opt - there are also Detailed Care Records, which you can't opt out of.
There is the very real prospect that people will opt out of Summary Care Records, and think that they've opted out completely. Sometimes, it's almost as if the whole thing about Summary Care Records, and the option of opting out, is a trick. You can't opt out of Detailed Care Records.
Very very slanted letter
I had the letter. Pages of bumf telling me how wonderful it was, no warnings at all. A multi-page booklet on all the wonderful things it could do. A form to send off for more information.
And if you want to opt out? Well, it did get mentioned. But there's no form for that, and it's not one of the options you can send off for. To opt out you have to go to a web page or phone a number.
So I download the pdf from the web page. A three page document. Two and a half pages of telling me how wonderful the system is and how I shouldn't opt out, and a half-page opt-out form to send to my doctor.
And all that was on that form were standard identification details, and a signature and date.
It would have been no problem whatsoever to include that form with all the pages of other stuff. But then of course people might have seen it and used it - they might actually have made their own choice instead of being bulldozed by our 'democratic' masters.
Even if I hadn't previously intended to opt out, that form would have made up my mind for me. It makes it perfectly clear that their claims and promises are nothing more than standard NuLab lying in their teeth.