The NHS plan to share our medical data can save lives – but must be done right

Care.data, the grand project to make the medical records of the UK population available for scientific and commercial use, is not inherently evil – far from it – but its execution has been badly bungled. Here's how the government can regain our trustEverything would be much simpler if science really was "just another kind of religion". But medical knowledge doesn't appear out of nowhere, and there is no ancient text to guide us. Instead, we learn how to save lives by studying huge datasets on the medical histories of millions of people. This information helps us identify the causes of cancer and heart disease; it helps us to spot side-effects from beneficial treatments, and switch patients to the safest drugs; it helps us spot failing hospitals, or rubbish surgeons; and it helps us spot the areas of greatest need in the NHS. Numbers in medicine are not an abstract academic game: they are made of flesh and blood, and they show us how to prevent unnecessary pain, suffering and death.Now all this vital work is being put at risk, by the bungled implementation of the care.data project. It was supposed to link all NHS data about all patients together into one giant database, like the one we already have for hospital episodes; instead it has been put on hold for six months, in the face of plummeting public support. It should have been a breeze. But we have seen arrogant paternalism, crass boasts about commercial profits, a lack of clear governance, and a failure to com...
Source: Guardian Unlimited Science - Category: Science Authors: Tags: Data protection The Guardian Big data Health Medical research Society Technology Features NHS Science Source Type: news