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James McCann's avatar

The other group of patients and researchers worth mentioning is UK Biobank. I joined the Biobank at its inception in 2006. It started with a very comprehensive medical examination and health history. Then, over time, I'm invited to complete questionnaires about my physical and mental health, my diet, way of life etc. and from time to time (particularly during the current pandemic) I am sent a kit for taking a small blood sample and sending it back to them (it's very easy and only involves a pin prick). I'm sure one of the lab coats from Biobank can explain what advances can be credited to this mass of data over time, I'm merely one of the lab rats, but happy to play my part.

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David's avatar

Delighted to see your support for health data sharing. I became a 'use My data' member when I was frustrated that my hospital consultant couldn't see my GP generated test results on his computer system. The GP and the hospital are in 2 different trust areas. My work around was to take my iPad with the NHS App on it, where I can display my test results, into the Hospital for the consultant to see.

The NHS digital strategy seeks to improve such silly situations but their communications around the subject to reassure patients, as you say, are woeful. I suspect that Ministers/Spads/senior officials fearing negative headlines are holding back the Comms plan. Somebody senior needs to be brave and communicate the benefit of health data sharing.

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