Article by Roger Taylor published by the Guardian Healthcare Network
Without data sharing we are either blind to the impact of social institutions or we give those who run them control over the public narrative of their benefits.
Care.data, the NHS plan to create a national dataset of patient information that could be shared with researchers, has officially been brought to a close. The announcement a couple of weeks ago came after lengthy argument about the degree to which individuals’ rights to control the use of information about them had been ignored by government.
The news has prompted concerns about what was being lost in this process. Writing in the Guardian, Polly Toynbee said “a fashionable paranoia about data collection” was preventing “so much potential good”. She highlighted examples of potential life-saving discoveries that have come from the use of similar data systems, for example, evidence that a treatment for diabetes appeared to protect against cancer. Read the full article here.