5 Comments
Jul 21, 2022Liked by Rory Cellan-Jones

It is so frustrating. As patients, my husband and I signed up to UK Biobank at its outset, recognising its research potential. I hope that the college can find ways to encourage GPs to, in their turn, encourage patients to participate, or at least to flag up the existence of UK Biobank.

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So frustrating. I thought all this was resolved, a truly backwards move. Perhaps we can raise this with Baroness Nicola Blackwood?

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If I were a gp I’d worry that the data is exactly what makes the NHS valuable and that Hancock will have spotted that a precedent has now been made and so it’s a matter of time until it’s made available to the Private Healthcare market.

Giving the go-ahead to releasing patient data would make them complicit.

There is a MS Register that is managed from Swansea Uni that tracks data from pwMS and makes it available for research and users regularly update the mental health sections with all the other information so it’s connected. The MS Society provides the funding for it I think.

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The fundamental question that needs answering is, whose data is it?

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