Ethics Untangled

30. What Should Doctors Be Doing With Your Data? With Jon Fistein

Jim Baxter

Do you know what medical information is held about you? Do you know who is allowed to have access to it? Doctors collect lots of data - often quite personal - about their patients. This data needs to be collected, stored, and shared, sometimes quite widely, so that the patients can receive effective care, but also so that the medical profession can better understand diseases, how they spread and how to treat them. In the UK, there is plenty of guidance for GPs about what information they can store, who should have access to it, and when. In fact, according to Jon Fistein, a doctor himself as well as an academic looking at the ethics of health data, there's too much guidance, it's too complex, and it's not always consistent. As a result, most GPs don't really understand what the requirements are, let alone patients. We talked about what can be done about this, and why the traditional idea of patient information being kept 'in the strictest confidence' isn't really going to cut it in today's data-driven healthcare context.


Ethics Untangled is produced by IDEA, The Ethics Centre at the University of Leeds.

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