Beneath the headlines about the National Programme for IT – billions wasted, systems underperforming or failing to deliver – lies another story, one that will outlast any particular NHS IT system.
It's the push for control: control of your and your children's medical records – and their children's… and theirs.
This is a fundamental shift, and one that cuts to the heart of the patient-doctor relationship. Putting everything into one pot, no matter what protections you attempt to bolt on, makes compromises inevitable – as both Gordon Brown and Alex Salmond have been unfortunate enough to discover. NHS smartcards are being stolen, lost and abused. It was the same with passwords, and will be with any form of access control.
The creation of centralised systems that make sensitive personal information accessible to many, and not just those directly involved in providing care, undermines the confidence patients can have – must have – if they are to disclose things about themselves for their own treatment and well-being, and for the wider public health.
The myth is that the patient is at the heart of these systems; that they are for our convenience or safety, or purely administrative and not to serve Whitehall's explicit goal to 'overcome current barriers to information sharing' or the interests of a powerful medical research lobby.
In reality the vast majority of patients are highly motivated to look out for their own data and, being the person most likely to be affected, are the smart choice if you're trying to 'join systems up' – especially in the sorts of critical situations being used to sell the Summary Care Record. Those with potentially life-threatening conditions or allergies to particular medicines already wear Medicaid bracelets. Pregnant mothers carry their maternity records.
Like many massive, centralised government IT programmes, NPfIT initiatives are presented as if there were no alternatives. And a huge amount of effort is being expended to manufacture consent.
From 2006, NO2ID has helped campaign for patients' rights over the Summary Care Record. To exercise what control they could. Though the vast majority of GPs and the public opposed the uploading of patients' information without explicit consent, Connecting for Health pushed on regardless, uploading the details of anyone who failed to respond to a single letter.
No-one knows how many of the hundreds of thousands of patients whose details have been uploaded actually received or read the mailshot. No-one knows how many simply binned the envelope, thinking it was yet another mass-mailed circular. No-one knows how many who actually read the leaflet, heavily weighted against opting out, were dissuaded from acting when told they would have to confirm their decision in person.
Connecting for Health is using what are effectively inertia selling techniques, making those who might wish to opt out jump through unnecessary hoops. Which is why, with pre-election "purdah" almost upon us, it's multi-million pound inducement to ramp up the mass roll-out of SCR is all the more extraordinary. Surely the Department is not playing politics with patients' records, in the face of Conservative and Liberal Democrat proposals for more localised or decentralised approaches?
Let us hope that this time every mailout will contain the required opt out form, conveniently absent from previous mailings. Failing to include the form may seem trivial, but it will have significantly reduced the numbers taking action. For the only action patients can take on receiving the information is to opt out. Inaction implies consent.
A radical rethink is long overdue. It's not just about IT – it's never just about IT. But whatever systems get built, it is vital that they provide meaningful mechanisms of informed consent and put doctors and patients back in control.
Staff
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