15 June 2020
In May, we were awarded £50,000 from Innovate UK to develop a new app, #ConnectEP, to support the epilepsy community. This app will help connect people with epilepsy: with clinicians, with charities and with technology.
We’re gathering a wide range of opinions on what we should prioritise in the first version of the app – please complete and share our survey with anyone who has experience of epilepsy and would like to share their ideas.
There are a few complementary strands we’ll be initially developing within the app: firstly, encouraging people with epilepsy to record important information. This could include fixed information it’s easy to forget, like appointments, details of your medical team, and medication history, but also could track information about seizures, mood, sleep, diet, exercise as well as medication logs and reminders. By recording this information, it can then become possible to notice links between activities and your seizures. It’s also a really useful way to store information to share and discuss with your medical team. And longer-term, this information could be combined with other people’s – to look for broader patterns and links that could then be investigated and properly researched.
We’d also like to include news and updates about current epilepsy research. This could be interviews with researchers themselves, new published research, updates about medication guidance and advice about how to access research yourself. There is a already lot of information and some amazing resources, with plenty of charities and organisations to support you, but it’s not always easy to find what you need – our app will help signpost you to trusted resources to help inform and educate yourself about current research into epilepsy.
Finally, we’d like this app to be used to connect people with current research trials. There are already portals, including the NIHR site within the UK, and the NIH site in the US, but many people aren’t aware of them. We could also directly notify you of new trials that you’re eligible to join – a lot of researchers can find it difficult to recruit enough participants that meet specific criteria, so this could help improve research into rarer conditions and syndromes.
Lots of exciting options, but we really want to develop ideas for this app together with the people that will use it – so please take 10 minutes to answer some questions on our survey.