Reply to post: Re: Sod off.

Campaigners cry foul over NHS Digital plans to grant policy wonks and researchers access to patient-level data

Anonymous Coward
Anonymous Coward

Re: Sod off.

(My wife works fairly high up in the UK Medicines and Healthcare products Regulatory Agency, hence the reason for A/C.)

I wouldn't read too much into "previous" data sharing schemes, not if you knew the actual reality, data collection inside the NHS and public medicines bodies is a complete mess - its stuck in the 80s, there is little normalisation of data, by this I mean, data collected by hospitals is subjective "opinions" written by Dr's and other professional, often is text/sentences etc. Likewise there is very little standardisations of measurements, for example, one Dr write "High levels of pain" another writes "Pain 8/10".. Which if you've done anything with databases or data analysis, you'll know is useless (except for human reading)

But something does need to be done, we're missing a massive opportunity. "WHHATT?" you scream, well, Imagine a drug has been licensed for acne treatment, but they later find it could also have extremely effective impact to slowing/stopping alzheimer's, but its not licensed, the NHS can't generally prescribe it. So, you wait severals years for the manufacturer to run a trial and apply for a license (if they can be bothered) - Or, how about if a group of GPs could quickly be co-opted to run a virtual-trial, with patients from their surgery, the findings are reported back in a "standardised" way, that allow the manufacturer and MHRA to quickly establish its effectiveness and license it within 12 months (compared to 5 years, doing it the traditional way).

It's a crude example, but hopefully it gives the picture... Imagine the same for a cancer treatments.

It's easy to say "over my dead body", but honestly, with a properly integrated and digital NHS, we could become the world leader in treatment development. And since with Brexit, we'll no longer be part of the European drugs licensing scheme, pharmaceutical companies either won't bother licensing them here, or we'll get them last (they'll go for the biggest markets first, i.e. Europe, USA, China etc etc), so doing something to attract them, can only be beneficial (both for our own health and economy).

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