3 ms·
Amusingly, I find point #4 (which you skipped) completely reprehensible and unambiguously the worst offender. All these sorts of arrangements are done within a
by 3JPLW 10y ago
Amusingly, I find point #4 (which you skipped) completely reprehensible and unambiguously the worst offender. All these sorts of arrangements are done within a legal context. If they satisfied the legal requirements, then the other points lose their punch.
3. If you want to learn new insights, you — by definition — need to include data that a priori don't seem directly related. This point even notes that the data was technically and legally well-scoped.
5. Sounds like they were within the terms of the existing data privacy agreements given 6. Again, I don't know UK privacy laws.
6. My impression from the paper is that they're not only trying to manage AKI but also improve the detection of it. Ok, sure, they're not going to improve detection in deceased or transferred patients. Those probably should have been minimized.
- throwaway729 10y agoAs you noted, the fundamental problem underlying 3,5,6 is that they're trying to detect AKI. That requires everyone's data. I'm not opposed to that in general, but there really ought to be 1) an opt-in or at least a well-advertised opt-out mechanism; and 2) an independent audit of how data is used. FWIW I think this was a healthy push-back against "just trust us" and hope the result is a cleaner template for future similar projects.