Some gr8 new health research apps involving citizens are coming online in 2016. Here’s a quick peak.

In my opinion there are ‘happy clappy apps,’ ‘crappy apps’ and then there are the ‘apps’ that work.

Late last year PatientView – the font of all knowledge on what makes a good app from a patient perspective – published a survey showing 9 out of 10 app users found most health apps to be rubbish. Or something like that.
About the same time I attended a review panel of scientists and patients. In front of them was an application. Part of it was a straightforward research proposal. But on the side it also proposed an ‘app’ to collect real-time data. A bit like you can order green beans with your main meal in a restaurant.
Well, an interesting discussion ensued. The scientists were agog with excitement at this ‘new technology.’ Evidence went out the window. The patients contested it strongly.  They said it was a nice idea but they wouldn’t be able to use it – literally. It took a long time for the scientists to finally hear this.  I am pleased to say the funder responded appropriately.
I suppose it was only natural for it to take some time before the really good apps begin to break free of the noise that has surrounded the use of apps in health.  Here are two I am very pleased to point you towards:
100 for Parkinson’s is a global study that had its formal launch today and is aimed at helping further research into Parkinson’s disease.  The people behind the project which include Cure Parkinson’s, Parkinson’s UK and many others are looking for 100,000 people who have an apple or android smartphone or tablet to track their health over 100 days.  This page tells you more about it and how you can take part but here’s a bit more from the publicity blurb:
“100 For Parkinson’s is a smartphone based citizen science study to fill the information gap on how people with Parkinson’s manage their health in between visits to the doctor. Participants track the ten most important aspects of their health for 100 days using the uMotif platform on a smartphone or tablet. Everyone will track the same 5 health factors and then choose another 5 aspects of health that are most important to them. Participants can also use the uMotif app to manage medications, set reminders, record diary entries about their health and connect wearable devices. In return, people can share experiences and see how everyone taking part in the study is benefitting on the study website. The data donated will also contribute to academic research approved by a committee led by Parkinson’s charities in the UK, helping to unlock new discoveries in treatment and management of the condition. Everyone can take part even if they do not have Parkinson’s at”
Then there is the wonderful, wonderful ‘cloudywithachanceofpain’ project also using the umotif app  which I helped to launch last month.  It has had a host of coverage on the BBC and elsewhere and many thousands of people take part already.  This aims to recruit people suffering from arthritic pain to answer the 2300 year old question of whether their pain symptoms are pain related. Scientists have said the evidence is uncertain.  Clinicians have often pooh poohed it. Now patients themselves get to put the question to the test.
Watch this space as more apps of a similar ilk appear this year.  For instance, coming soon will be #BritainBreathing.  This is a joint project between the British Society for Immunology, the Royal Society of Biology and The University of Manchester. Its aim is to use a mobile app to map seasonal allergies (hay fever) and explore the relationship between allergy symptoms and environmental factors in the UK.
All these apps are being classed as citizen science projects but they feel like something more than this to me.  Indeed, bearing in mind the co-design principals that have been followed to develop each of these they demonstrate just what can be achieved in terms of accelerated innovation by working in this way.
It puts into perspective the discussion I was part of at an e-prescribing conference yesterday where people were rightfully complaining how one still can’t get wifi in many hospitals.  About the only place in the world where this is so.  What does it say about the NHS. Especially when you see these apps come on stream.
What’s that idiom? ‘Nero fiddled while Rome burned.’  Or in this case: ‘The NHS fiddled with its floppy discs while everyone else went online.’

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s