This is the warm up talk I gave the evening before #PDDigital15 on 13th May 2015

I happen to have Type 1 Diabetes.

That means by default I am a data monkey; what I mean is someone who is concerned with data all day long, every day.

Diabetes is all about information. Yes, it’s also about your toes and their potential to fall off but it’s also about how we as individuals manage (or don’t) lots of information. This little bag is full of real raw data – a pile of test strips. Each one represents a finger prick and a result showing my blood glucose.

I’ve never been very good at meticulous writing down of numbers. Perhaps my attitude to my diabetes is the issue; it’s not my life, it’s just part of it. When I was diagnosed (in the olden days) the GP came to the house and knocked on the door to say I needed to go into hospital (we didn’t have a phone) but I was out with my boyfriend on his motorbike. I’m not sure my attitude to my health has changed very much!

In the years that followed I was never very good at it. I did test, sporadically, my blood sugar but was always poor at writing it down. It seemed to be the biggest pain in the bum ever. First of all I had to test my urine (yep in a test tube) and then it was what were called BM sticks. Each test took around 5 minutes from start to finish. Five minutes is a long time when most of it is spent watching the colour changes on a small stick. I had lots of things as a young person I would rather be doing! I had a blood spotted book I tried hard to write things down in…. boxes on forms in a little book.

But I never did.

Innovation has always been important in diabetes care. The move to near patient testing where we were given blood glucose meters was a brilliant shift. It was almost life changing and is a great example of Christenson’s disruptive innovation – putting the power – information – in the hands of patients. Suddenly we had a meter that was accurate and over time the time taken to run a test got less and less. But we still had the little books, the need to write things down remained. I know I started testing more when the testing time gradually went down to the 5 seconds it takes today.

What health care professionals think matters isn’t in my experience actually what matters to patients and that’s part of the point of ‘People Driven Digital Health and Wellbeing’. Patients/people/citizens driving developments in the things they think are important.

So I test up to say 8 times a day; 8 data points every day plus all the data from my beloved insulin pump, the other innovation that has changed my life with diabetes.

Yet here we are in 2015 with few ways to analyse my data. Many of the solutions still involve multiple data entry – the 2015 version of writing things down in a little book. It’s just not the answer.

Why? What are the issues?

The first is that there is analytical software but the suppliers seem to think my doctor, who I see once, or maybe if I’m lucky twice a year, needs the data and the analysis tools more than I do – makes no sense. I make micro and macros adjustments every day to my regime – staying well and managing myself. The suppliers have created a system that allows the technology to send data to my doctor and them to use tools to manipulate it but only gives me the most basic functionality. The suppliers market to the doctors and nurses in an old paternalistic model where the clinicians are ‘in-charge’.

The second reason is they are trying to fix the wrong problem. Designers make assumptions about what matters, create solutions, then try to lock us into their system. In my experience they rarely listen*. I want something that is focussed on simple speedy collection of data – no duplicate entry please, and something that allows me to do trend analysis, that’s why I call myself a data monkey.

To cure these issues we need open APIs and standards that allow systems to talk to each other and allow us to move our data around!

Of course there are some very clever people who have diabetes or have children with diabetes, why wouldn’t there be? Brains are not exclusive to those people in the system. In the USA a movement started called #wearenotwaiting. A group of people with a vested interest who decided they would hack into the back of all the equipment we use, pumps, testing meters, analysis software and create something for us. They believe they can create the first closed loop system for diabetes faster than the system can. Of course I know this is a risk but I do believe this is the best hope for us for someone to create something that works for us and gives us more control.

Sadly we still have a long way to go. I know from my professional life that people in the system still think we should be creating solutions so doctors can see the data we enter and that is seen as the issue, whereas I believe we should start with the person with the Long term condition and meet their needs first. Taking a look at #wearenotwaiting would be a great start.

So, for those of us in the data game, every day, even Christmas day, we survive doing ratios, trend analysis, and measuring. We need better solutions and need to be more involved in their development, even in control, in order to get the pace and scale of development we need.

#PowertothePeople

• Just a postscript to say I collected my new insulin pump the day after the conference – it has some nice new features so perhaps someone is trying to listen! Thank you Medtronic but please can I have the better analytical software? I think I might want it more than my Diabetes Specialist Nurse!