Ewen Callaway. UK push to open up patients’ data. Nature 502, 283 (17 October 2013) doi:10.1038/502283a.
Excerpts....
...... 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.......
....... According to some proponents of the plan, patients have little reason to opt out. “People think their records are being shared much more than they already are,” says Nicola Perrin, head of policy at the Wellcome Trust, the UK’s biggest funder of biomedical research. She worries that the public in England have not been adequately informed about the benefits of records sharing, such as improved health care, nor about measures intended to protect privacy. “I think there is underlying support for it, provided one can explain that there are safeguards, and that it isn’t your most personal secrets that researchers want to get,” she adds......