3 things I want NHS IT to do for me

I wrote this a s a guest blog for Roy Lilley at NHS Managers.net. There were three more guest editorials – loads of good ideas!  Scroll down the RHS of the main e -newsletter to click through to them…

NHS Managers.net – Monday 7th September

I am a patient who has worked in and around the NHS most of my working life. These wishes, not action plans, are therefore just from a patient focus. I use my own experiences as the core example. Not pseudonymised. I trust you not to abuse my openness!
First and foremost, my records (for they are about me) should be fully sharable. That means by me too. If I know what’s there, it may make me more amenable to sharing it wider via Tim Kelsey’s shelved data modelling project. (Care.data)
Everyone does this level of openness in Scandinavia, I understand. Long term longitudinal data analysis always seems to emanate from there – maybe because everyone does it already?
Look, I know GPs are already quaking in their litigation fearful boots, thinking some scallywag will take exception to what you wrote in 1978, but maybe I was being a hypochondriac that day? Let’s get adult about this.
I’ll sign a disclaimer saying I will not sue for defamation. This would be the boldest step to involve me in better lifestyle choices – a Health led health service, rather than sickness led.
And when I say fully shareable, I mean electronically. On a (password protected) data stick.
So anyone I see can stick it in their computer, with my permission.

Ah, there’s the rub. Do you trust me? When I have my annual bloods (amlodipine check for any dyscrazias or liver changes, I presume – no-one has ever told me why they are doing it), then I want to see the results.
I had to ask permission to get them printed out on paper! Why? I am a biochemist. It helps me understand what that extra glass of wine might be doing. As the Glucose Tolerance Test suggested I might be pre diabetic – I bought myself a blood glucose meter (Sorry team – I used to sell them, love near patient testing, and want the incentive to change my lifestyle). It is helping.
Have to buy the strips myself of course, but hey… Now, why can’t I e mail my results to my GP? Or send them to add to my notes? Same with my BP results (yes, I have a home monitor). There are many like me. Use us to help you.
If all the records were Cloud based, I could do this myself. What’s wrong with patients adding to their own notes? Yes, the system would have to be totally secure (Don’t use the Ashley Madison people – maybe the Amazon experts?), and you cannot as a patient expect to redact what a health care professional has written, but that is simple IT stuff.
I understand why the providers of our NHS service don’t want to be inundated with e mails. But we have moved on a lot. Telephone appointments are fab for us workers. We all have queries sometimes, and maybe just need reassurance.
We could go further. I had my first experience of using webGP this week. Not a Bank Holiday success. , I thought it would be a good way to circumvent the lack of GP access.  If you have an ongoing but non-emergency problem that fits into the ‘long term condition’ areas in the system – then it felt very logical to communicate that way? They didn’t phone back by end of Tuesday, like the e mail said. I got a call on Thursday from a receptionist to make an appointment with a GP…
The algorithm was good. The software worked fine. It just fell over when the people got hold of it.
Let’s get real here, and just put yourselves in our shoes. Saying you might phone anytime during the day by end of work in two days’ time isn’t good enough. If you want it to work do like the supermarket deliverers. Give me a one hour slot. Be patient focussed. I’m as important as you. Treat me as an equal, please. Then we can help each other.
All of the data, records, reports, x rays and more should be there at my surgery, on the Cloud and on my memory stick. (All lab reports and x rays should only be sent electronically too). If that’s the case, I don’t really need my local GP or local walk-in centre for emergency care.
I just need someone with a lap top and medical expertise. I do need my old fashioned GP for long term conditions. Different needs need different interventions
And none of this needs new technology.
Just a change in attitudes.
Phil Hawthorn

A Parable

A man in a hot air balloon realized he was lost. He reduced altitude and spotted a woman below. He descended a bit more and shouted, “Excuse me, can you help me? I promised a friend I would meet him an hour ago, but I don’t know where I am.”

The woman below replied, “You’re in a hot air balloon hovering approximately 30 feet above the ground. You’re between 40 and 41 degrees north latitude and between 59 and 60 degrees west longitude.”

“You must be an engineer,” said the balloonist. “I am,” replied the woman, “How did you know?”

“Well,” answered the balloonist, “everything you told me is, technically correct, but I’ve no idea what to make of your information, and the fact is I’m still lost. Frankly, you’ve not been much help at all. If anything, you’ve delayed my trip.”

The woman below responded, “You must be in Management.” “I am,” replied the balloonist, “but how did you know?”

“Well,” said the woman, “you don’t know where you are or where you’re going. You have risen to where you are due to a large quantity of hot air.

You made a promise which you’ve no idea how to keep, and you expect people beneath you to solve your problems. The fact is you are in exactly the same position you were in before we met, but now, somehow, it’s my fault.”

(Thanks to Chris Bray for this variation on a previous story. Think today, at work – am I being a bit like the extreme engineer, or the out of touch headless chicken manager? And if you are being a bit like that, smile at the memory of this story, and fix yourself!)