ConnectEP: The smartphone app connecting people with epilepsy to researchers and neurologists

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We will develop a mobile app for people with epilepsy. The app will empower people with epilepsy to best manage their condition within the home environment, whilst contributing to their sense of purpose through voluntary epilepsy research involvement. In response to the COVID-19 crisis, we conducted a global survey of people with epilepsy. We received over 150 responses, including nearly 100 from the UK alone, between April 7th and 14th. Our survey revealed concerns about the impact of isolation on stress, mental health and anxiety, memory and sleep, with consequences for drug adherence and seizure control. Our survey further revealed connecting with researchers and healthcare providers as important priorities for people with epilepsy. Being empowered with relevant information and contributing both to management of their own condition and a broader research effort to understand epilepsy, were considered very important for reducing the impact of isolation due to COVID-19.#ConnectEP will be developed in partnership with globally renowned epilepsy advocates, researchers, clinicians and charity partners. It will be an important resource for delivering up-to-date information, recording relevant information, access to latest research findings, and the ability to contribute to research and clinical studies. In response to the challenges of isolation raised by COVID-19, raised by our community survey, our immediate focus will be on stress and mental health, drug adherence, sleep and seizure occurrence.During the initial phase of the project, we have connected with a number of charities and organisations who are interested in developing data-driven projects, but who have not been able to develop sustainable business models around these. Extension for Impact funding will enable us to explore and formalise these relationships with partners whose missions are synergetic with the #ConnectEP app. As an example, during the initial phase of the project, we have developed a partnership with a leading UK research charity. #ConnectEP will provide a direct connection between the app’s user base and researchers who are either seeking funding from the charity or seeking participants for charity-funded projects. With this bespoke functionality, #ConnectEP will enable people with epilepsy to engage directly with researchers linked with the charity to help prioritise ideas for funding or become involved in studies.