#powertothepeople and #wearenotwaiting
A big thank you to Anne Cooper (who some of you may know better as @anniecoops) who is one of the organising team behind #PdDigital15, for this guest post on ground-up digital innovation:
A couple of days ago, at midnight, just as I was getting into bed I heard the dreaded noise of my insulin pump alarming. Now usually it’s nothing, at worst its running out of insulin, but this time there was a ‘button error’. In my experience that’s like a death knell, there is no way back from there and the pump usually needs to be sent back to the manufacturer, mainly because it’s unsafe without checking to assume it will deliver insulin safely.
It’s the third time it’s happened to me in a number of years. It’s frustrating and scary; this time I lost all my settings as I can no longer download them onto the PC as the software is incompatible with my current operating system.
Are you starting to sense where I might be getting to?
For all I love my pump I am not sure it’s designed for normal (if I am normal) folk. Normal folk need to tuck their pump into their bra occasionally (well the girls do) as for some of us it’s the only rational place to put it – that might be how the buttons were pressed although I don’t know for certain as I was getting ready for bed when it happened. Normal folk don’t write all the small changes they make to their settings because they are too busy getting on with their lives. Normal folk think that the pump and other medical devices should be designed to be integrated into normal living. Equally, normal folk expect them to keep pace with technology and be modern and up to date.
I believe that the best people to know what works for people with diabetes are people with diabetes. They really really know what it’s like to live with diabetes day in and day out. If we can unleash their ideas and skills I feel sure, for example, pumps would be better than they are. But also they will have great ideas about what could work better.
The people driven digital health and well-being conference is an attempt to bring such people together; people who have ideas and the skills to make better solutions. In the USA, #WeAreNotWaiting is the movement by normal folk in the diabetes community who are taking matters into their own hands. They are fed up of waiting and then getting imperfect solutions to everyday living with diabetes. They are developing platforms and apps and cloud-based solutions, and reverse-engineering existing products when needed in order to help people with diabetes use devices and health data for improved outcomes. You can see a link to the story behind #wearenotwaiting here.
I want to help to make this happen here in the UK, this people powered, solution driven, movement for better stuff for normal folk. The People-driven Digital Health & Wellbeing unConference could be the start of it – #PowertothePeople.