Privacy activists are giving themselves a big cheer following NHS England’s announcement that it’s putting the launch of Care.data, the central database of NHS patient records, on hold for a few months. It’s acknowledged that it did a poor job of telling the public about the scheme and their right to opt out, and is now stepping back to do it properly.
It wasn’t just the privacy groups that had protested – the British Medical Association, the Institution of Engineering and Technology and the Information Commissioner’s Office had all expressed their concerns. Given a few months, NHS England might take steps that will make these bodies happy. But I doubt if it will ever get the more militant privacy campaigners on its side, as they’ll still be able to make a noise about the more important issue – whether the data can be used to target individuals.
When the data becomes available for research, by public or private bodies, it will be anonymised. But there are some big question marks over whether that really protects people from someone digging into their medical records. There is evidence that if someone really wants to break down anonymised data they can do it by cross-referencing with other data sets; a report by the World Economic Forum has said the ‘triple identifier’ of birthday, gender and postal code is the giveaway for most people.
It’s a scary thought but one that should be kept in perspective. Identifying individuals takes time, and who would want to get at their healthcare data, and what would they do with it? It’s in the interests of the organisations that get access to the data to vet whoever works on it and place some heavy duty security controls in place. There is a risk, but it’s miniscule, and on a par with a lot of others we accept in our lives.
Against this are the benefits of making the anonymised data available for healthcare research, something that most people would understand and go along with. The data isn’t being collated just for the sake of it.
So NHS England could do worse than presenting it as risks v benefits. The more militant privacy campaigners would continue to object because they're concerned solely with the risk. But I expect that with an honest assessment of both the great majority of patients will be happy to part of Care.data.