There are people in my profession who think they can ignore this problem. Some are murmuring that this mess is like MMR, a public misunderstanding to be corrected with better PR. They are wrong: it’s like nuclear power. Medical data, rarefied and condensed, presents huge power to do good, but it also presents huge risks. When leaked, it cannot be unleaked; when lost, public trust will take decades to regain. This breaks my heart. I love big medical datasets, I work on them in my day job, and I can think of a hundred life-saving uses for better ones. But patients’ medical records contain secrets, and we owe them our highest protection. Where we use them – and we have used them, as researchers, for decades without a leak – this must be done safely, accountably, and transparently. New primary legislation, governing who has access to what, must be written: but that’s not enough. We also need vicious penalties for anyone leaking medical records; and HSCIC needs to regain trust, by releasing all documentation on all past releases, urgently. Care.data needs to work: in medicine, data saves lives.
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