NHS data and trust

Reading: Can better data save the NHS?, Nigel Shadbolt, Financial Times, 6 Aug 2024.

It’s not a “no”. It’s not a “yes”.

Data sharing is complicated, as 189 NHS trusts collect patient data through different electronic systems. AI models also use data from medical imaging, genomics and wearable devices. The ODI [Open Data Institute] recommends that the NHS and the new government adopt Fair principles for governing and sharing this data.

Without “transparent and innovative data practices [..] Streeting’s vision of Britain as a MedTech ‘powerhouse’ and the NHS unlocking AI’s potential will be difficult to achieve.” (Link added by me).

More detail is via an ODI white paper on building a better future with data and AI (PDF), which expressed the need for infrastructure, trust and empowerment — which I think everyone is getting on with. I don’t know much about the ODI, but founders include Sir Tim, so sounds legit.

For what it’s worth, the Tony Blair Institute is onboard with this sort of thing, too. In software land, interfaces and competing implementations kind of work, and I find something similar in the TBI recommendations:

The DHR [digital health record] should be a non-proprietary resource conferred on citizens by the Department of Health & Social Care (DHSC), rather than a private entity or the NHS. Its purpose should be to safely collect and store the personal health data of every citizen, with citizens in turn able to share that data with chosen third parties if desired.

There’s a lot of devil in the details of this ambition, especially if you read on in the TBI report where they call to “legislate for interoperability”.