The Sunday media have been trailing a speech by David Cameron tomorrow about giving us online access to our medical records and our kids’ school records, and making anonymised versions of them widely available to researchers, companies and others. Here is coverage in the BBC, the Mail and the Telegraph; there’s also a Cabinet Office paper. The measures are supported by the CEO of Glaxo and opposed by many NGOs.
If the Government is going to “ensure all NHS patients can access their personal GP records online by the end of this Parliament”, they’ll have to compel the thousands of GPs who still keep patient records on their own machines to transfer them to centrally-hosted facilities. The systems are maintained by people who have to please the Secretary of State rather than GPs, and thus become progressively less useful. This won’t just waste doctors’ time but will have real consequences for patient safety and the quality of care.
We’ve seen this repeatedly over the lifetime of NPfIT and its predecessor the NHS IM&T strategy. Officials who can’t develop working systems become envious of systems created by doctors; they wrest control, and the deterioration starts.
It’s astounding that a Conservative prime minister could get the idea that nationalising something is the best way to make it work better. It’s also astonishing that a Government containing Liberals who believe in human rights, the rule of law and privacy should support the centralisation of medical records a mere two years after the Joseph Rowntree Reform Trust, a Liberal charity, produced the Database State report which explained how the centralisation of medical records (and for that matter children’s records) destroys privacy and contravenes human-rights law. The coming debate will no doubt be vigorous and will draw on many aspects of information security, from the dreadful security usability (and safety usability) of centrally-purchased NHS systems, through the real hazards of coerced access by vulnerable patients, to the fact that anonymisation doesn’t really work. There’s much more here. Of course the new centralisation effort will probably fail, just like the last two; health informatics is a hard problem, and even Google gave up. But our privacy should not depend on the government being incompetent at wrongdoing. It should refrain from wrongdoing in the first place.