The more I think about it the more cross I become. It doesn’t affect me but I know it could… one day it will.
I feel I’m caught in the crossfire of a battle I didn’t ask for and a fight I can’t influence, in a war that, sooner or later, I’m bound to become a casualty.
I confess, I’ve never really been that bothered about getting access to my health records. It’s only recently I have become really aware of how valuable it would be to pool my records in the search for indicators, trends and predictions.
I get sick, I get fixed up, I get on with my life. The records get updated, I’m not bothered. If there’s a mistake… dunno. If my health is a gauge or barometer of what’s to come… dunno.
Well, it’s started to bother me. It’s the principle. It’s the lack of respect, dignity and the wasted opportunity that’s starting to irritate me.
It’s the fact that;
…a group of people, from a company, I know not which one, has decided, in secret, to create software, which the NHS has bought, that makes it well-nigh impossible, without an almighty palaver, for me to see my NHS records… as easily as I can see my bank-account.
And, the rules so prescribed, any good my data might do, is lost in a row about access.
I know where my records are. They are sitting, smug, in primary care and festering in secondary care.
If I had one, I could view my criminal record and show it to you. You could let me see the record the Constabulary might have about you. But, without a huge palaver, impediments and doh-dah I’d have a problem showing one doctor, the record another doctor has made about me.
It can be done but clunky is not quite the right word. Streamline, it’s not. Glitch-free, it ain’t.
The problems go back a long way. In 1948, when the healthcare industry was nationalised, no one really knew what to do with health records. No one liked the idea of giving them to the patients, so the Secretary of State said, give them to me.
Since then, layers of administration, legislation and data protection palaver have shrouded the whole process in mystery, compounded by IT systems that have evolved and developed without much thought to the people whose records they entomb.
The medical profession, not unknown for a pejorative line in records… the likes of NN4N, Numpty, Normal for Norfolk.
Or bloomers like; ‘occasional, constant, infrequent headaches’.
Better still… ‘exam of genitalia reveals that he is circus sized…’
… were none too keen to have their observations made public.
All in all, a cocktail, a confluence and a compost that makes the extraction and interconnection of data as difficult as extracting blood from a dehydrated stone.
Life has moved on and to hell with the regulations; the records are about me and therefore unarguably, indisputably, indubitably mine… end of… I want to see them and for them to be used to stop me and others getting sick again.
Against all this background it came as a very welcome breath of fresh-air when No18 told the audience at yesterday’s HealthChat that he intends to sort this out.
Assuming he can bang bobble-hat heads together and sort out exactly what interoperability really means, he will make it impossible to buy kit-n-caboodle that won’t talk to each other and won’t allow me access to my records.
As far as legacy systems are concerned he says he will change the rules of engagement so that they will have to upgrade to current requirements or current contracts binned. (Extract here)
That is tough, there will be a row, no doubt some will run to their lawyers, but…
… there is no ‘but’. It’s long overdue and spent too long in the too-difficult-tray.
My data is of narrow use to me but when it’s compared and contrasted with the data of other old-geezers, it starts to become meaningful.
When populations are compared, it becomes significant.
When we all become part of a national data-set, it is of huge importance to each and everyone of us.
If Number 18 achieves one thing… this’ll do for me.
Contact Roy – please use this e-address – roy.lilley@nhsmanagers.net
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