SUDEP Action

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NIHR positively reviews EpSMon in ‘Emerging technologies for the diagnosis, treatment and management of epilepsy’ report

The EpSMon app has received a positive review from The National Institute for Health Research (NIHR). The NIHR published a horizon scanning review of new technologies that are being developed for the diagnosis, treatment and management of epilepsy. The review looks at 114 emerging technologies in early clinical stage research for epilepsy, 27 of which were anti-epileptic drugs and 87 were medical devices, procedures and techniques. At least Eighty percent of the technologies reviewed were for the treatment and management of epilepsy. 

The NIHR are a body of the NHS who fund health and care research, and provide a research system in which the NHS can support outstanding individuals working in world-class facilities, conducting leading-edge research focused on the needs of patients and the public. They state that ‘exciting advances’ are being made in this area of epilepsy care, enabling patients to better track their condition, as well as providing great opportunities for data sharing and future research, which helps improve the impact of epilepsy and overall self-management. 

In the report, the epilepsy safety app developed by SUDEP Action, Cornwall Partnership NHS Foundation Trust, Plymouth University & Royal Cornwall Hospital Trust received positive feedback from both clinicians and people with epilepsy involved in the process:

“Excellent tool for continuously updating patient’s individual ‘RISK’ of their epilepsy on a 3 month ‘reminder’ basis. Keeps the patient aware of risks involved – and when further action should be taken e.g. to see GP/specialist.”

“If users find it useful then it is useful! If it’s free that’s great.”

The experts and people affected by epilepsy who were involved in the review process agreed that further evidence is needed for many of the reviewed technologies in order for future implementation in the NHS. This is something both EpSMon and the SUDEP & Seizure Safety Checklist Partners continue to develop, with over 10 publications since their launch, and future developments in the pipeline to build on their current achievement. 

EpSMon’s inclusion as one of eight emerging healthcare solutions chosen for the NHS Innovation Accelerator programme for 2016-17, is also a significant step toward the tool becoming implemented within the NHS; as a tool to not only help improve epilepsy self-management and overall awareness/discussion of epilepsy risks, but one (alongside its partner tool the Checklist) which could ultimately also save lives. 

Sammy Ashby, Project Coordinator for the Safety Tools project (and SUDEP Action Policy & Development Manager), comments: 
"For our safety tools to receive another positive review from an independent source is really encouraging as it demonstrates what the EpSMon & Checklist Partners, and the bereaved families and clinicians who have supported us throughout this journey have known from the start of these projects." 

"That they have the potential to make a significant difference to epilepsy care, open discussion of risk and in some instances, to help reduce the number of avoidable epilepsy deaths each year; as it is well documents that some of these tragic deaths are potentially avoidable with education, engagement with health services and support."