The Department of Health is trying to roll out the Summary Care Record to millions of patients before the next election. Doctors’ leaders are alarmed. Patients are being misinformed, and opt-out is being made difficult. Doctors have noted that in the pilot areas, seven out of ten patients are unaware that an SCR was created for them. The patient information packs don’t contain an opt-out form; you’re supposed to phone the call centre for one. Over two hundred thousand people have downloaded this website’s opt-out letter; now the NHS says it wants doctors to ignore this and get everyone who wants to opt out to use this form instead (which GPs can’t order in bulk). The press have noted that this is yet another national level programme that has been forced on the population without a full disclosure of what the programme is actually designed to do.
The information being given to patients is false and misleading. The SCR promotional leaflet says anyone who has access to your records … must be directly involved in caring for you. However, large numbers of officials will have access. Consent obtained by deception is no consent at all. Officials also talk about the SCR supporting emergency care; but the SCR won’t be available overseas (or even in Scotland). And if you do end up in hospital, there’s no guarantee the doctors will be able to identify you – your handbag might be left in the car wreckage or have been taken by the mugger. So if you have a condition that A&E doctors should know about, such as penicillin allergy, you’d better keep on wearing your dogtag.
The roll-out is rushed and displays typical incompetence: for example, some patients have been sent other patients’ letters. Given that one of the aims of the SCR is to give us online access to our own medical records, this is worrying: who else will have access? The answer is that even in the absence of accidents over 300,000 doctors, nurses, ambulance drivers, contractors and others will be able to read your records. You can’t keep a secret among that many people. In Scotland, when a similar system was introduced, a nosy doctor peeked at the records of celebrities, including Gordon Brown and Alex Salmond. He wasn’t prosecuted; perhaps it was just too embarrassing – especially after a report we wrote last year pointed out that the SCR, like several other NHS central systems, had human-rights problems following a finding by the European Court of Justice that we are entitled to restrict our personal health information to the clinicians directly involved in our care.