UK push to open up patients’ data

Government faces obstacles to mining medical records.

Ewen Callaway

15 October 2013

Patients in England are being encouraged by the National Health Service to make their medical records accessible.

67photo / Alamy

In August, posters began appearing in doctor’s practices across England, urging patients to say yes to their medical records being used for scientific research — or, more precisely, not to say no.

The move, now gathering momentum, is part of a campaign by the UK government, alongside major research funders such as the Wellcome Trust in London, to convince a sceptical public to share their health details with researchers, through a system in which patients must expressly opt out. Privacy advocates are encouraging them to do just that.
The government’s plans are part of a shake-up of health data in the National Health Service (NHS) in England, the world’s largest public-health system, that cares for about 53 million people. Following reforms made in April, it will in the coming weeks begin radically changing the way it handles patients’ records. This will involve establishing a central repository to connect hitherto disparate electronic data from general practitioners’ (GP) practices, hospitals and disease registries.

IPSOS Mori/Wellcome Trust 2012

Such linkage, already in place in Scotland and Wales, where the NHS is run separately, will deliver better health care, the government says, while establishing the world’s most comprehensive patient database for research. It could be used to find new uses for existing drugs, and speed up the transfer of research to the clinic.