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I’m a believer
I was working in a role as coordinator for a remote and rural long-term-conditions network. One of our challenges was to find a way for patients to ‘own’ their own health data and then make it portable in a way that would enable them to update their health status at each point of contact with a professional. Given that these patients might travel miles and across borders to access different professionals, a small, compact health record would be the solution to lost information, out of date results and misunderstandings.
I was in an office surrounded by the sort of people who could be labelled geeks, although this was unkind. They were a great bunch of chaps who put up with my unshakeable belief in the possibilities of information technology, despite knowing that the reality would never live up to my hopes. I wanted to rely on computers for everything, even the things they were years away from achieving.
My idea was dastardly simple; the patient had a data memory stick that held all their latest test results, clinical info, photographs and investigation findings. They arrived at the clinic, wherever it was, plugged in the stick and hey presto! All the physician needed to know was right there. The stick could be encrypted to prevent data compromise and there would be a centralised back up in case the dog ate it.
As colleagues shook their heads sadly in response to my ravings, I was undeterred. But it never happened.
Now I am able to log the calories in a bowl of soup by scanning the bar code on the can with my phone. My Nectar card allows retailers to check out my shopping habits and issue me with appropriate vouchers; my web browsing provides ad men with the evidence that prompts them to send me links to stairlifts, wrinkle cream and sensible underwear.
If not now, when? A credit card with health data is surely not a whacky idea in these times of technological wizardry. Swipe and go user info that would allow all of the necessary information to be uploaded to a GPs computer system and save them hours faffing about asking people with learning disabilities whether they need glasses for reading.
Paper no more
We provide our service users with paper passports containing their vision data, how to best assist them in getting about and the optimum environment to communicate. PAPER PASSPORTS! They last around two weeks before being left on the bus or rained on. And the data is usually pretty last week’s news too.
Now before I go completely crazy, tell me that someone, somewhere, has realised my idea - that this sort of portable data is out there, saving lives and making people’s care easier. As my old nan used to say: “They can put a man on the moon……”
Ginny Tyler – QCS Learning Disability Expert Contributor