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That's more or less how it ends up working in the NHS, and I guess it's Conway's Law playing out again rather than being intentional. Health is particularly di
by dkarp 5y ago
That's more or less how it ends up working in the NHS, and I guess it's Conway's Law playing out again rather than being intentional.
Health is particularly difficult because it's both data that needs to be accessible by a large number of different people/organisations and also about as sensitive as you can get. Any attempt to make the data more secure necessarily slows access, but making the data more accessible also makes it less secure.
Having seen the quality of some of the systems holding this data on the edges, I would rather see a central database and a lot of funding go into the technology of that system. Why? Because I agree with your other post, that technical controls are the only solution. Controls that could make it impossible for the data to be misused or leaked, or at least make access auditable. That's where the research and funds should be spent.
Ideally, that could be done by every data custodian at the edge, but I just don't think that will happen. It's easier to solve the problem in one place than in 10s or 100s or 1000s of places.
In the UK, there are lots of central data repositories holding pretty sensitive information. I think it's fair to say that the government wouldn't have much problem finding your health data, along with detailed census/tax/internet/phone/travel data, if they decided they wanted to.