Teenagers, parents, nagging, Cystic Fibrosis and the NHS
How one startup is hoping to improve life with Cystic Fibrosis
Last year I spoke at Reasons to conference as part of the Elevator Pitches section. It was a great opportunity to share a project we’re really proud of working with Innerstrength Health. We had the opportunity to help them design and develop a new app that helps teenagers with Cystic Fibrosis better manage their conditions better.
A big part of the work Fluxx did was visiting and talking to medical professionals from inspirational institutions like Great Ormond Street and Royal London hospital and finding out what they needed to improve the care they gave teenagers. For me personally though, it was meeting the teenagers themselves (and their parents and families) in their own homes and seeing what it was they wanted.
Below is a video of my talk and the transcript, where you can find out more:
Transcript:
My name’s Digby and I’m a researcher. My thing is going out talking to people in their homes and workplaces and talking about problems that hopefully we can solve.
I want to talk about a project that we did which has just gone through the discovery phase - getting a bunch of user requirements and designing things for teenagers with life long diseases.
So the disease we’re talking about is cystic fibrosis. When you’ve got thick mucus in your lungs and in order to breathe that you have to do hours of exercises every single day. On top of that you have to take pills every single meal time with your food and if you catch a cold or a flu off someone you’re there’s a really high chance you’re going to be hospitalised for weeks, maybe months.
That, plus a whole lot of other stuff, means you’ve got a life expectancy about half that of a normal person.
Teenagers think this is really boring and they want to do normal teenage stuff like watch YouTube, play Minecraft, go out.
Parents also think this is really boring. Lots of parents have to nag their children, but these parents are quite literally nagging to prolong the life of their teenagers. What they do now will affect them years down the line. On a practical level as well the parents are also doing those exercises every single day while getting teenagers to do them.
You’ve then got the medical teams: doctors, physiotherapists, nurses, psychologists. They all want to improve the quality of life for their patients. But they’re only as good as the data that’s being provided to them. Currently they have a clinic every eight weeks with their patients and they’re reliant on the tests conducted then and what the teenagers tell them — and normal teenagers aren’t that chatty, or all that reliable to tell you what they’ve been up to.
Then there’s the NHS. Demand for the NHS is always increasing generally, and for new technologies and treatments, so if we can keep these teenagers healthy and out of Hospital then that money can be better invested elsewhere.
So we’ve got cystic fibrosis, and teenagers and parents and medical teams and the NHS all to consider in this problem.
We’re looking at digital apps — the reason why is because there aren’t many good cystic fibrosis apps at the moment, which can handle all the complicated medicines, treatments and exercises. Currently they don’t integrate that well with technology like Fitbits and and they are all designed for adults, none are really designed for teenagers.
So we’ve designed a concept called Hakka. For the teenager, is it has their personalised plan — their medical treatments, their exercises. It reminds them what to do with smartphone notifications and alarms. It uses things like fitness trackers so they don’t have to remember what they’ve done and tell people what they’ve done.
For the parent it shows when the teenagers have done their exercises and treatments. So it helps with nagging, but it also helps with being nice as well.
For the healthcare professional it gives them that data as the teenager goes into the clinic so they can prescribe the next eight weeks of treatment better.
So we’ve taken that app and submitted a bid for extra funding, we’re feeling pretty positive about it. So the next phase is about prototyping the app to see if teenagers will even touch this thing.
Update
Innerstrength Health successfully won €500k of funding to expand their business and are soon to launch their first clinical trial — watch this space!
