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Secure video sharing to improve remote care for people with epilepsy

Prof Sameer Zuberi

Professor Sameer Zuberi

Innovations in Healthcare Research Awardee

- Royal Hospital for Children Glasgow & University of Glasgow

Date Published: December 16, 2020

Author: James Matejka

This week on the Research Blog we hear from Professor Sameer Zuberi, our second Innovations in Healthcare Research Awardee. Professor Zuberi has helped to develop a new secure video sharing platform which enables people with epilepsy and their families to share videos of seizures with their doctor using their smartphone. His Innovations in Healthcare project will now assess how this video sharing platform has improved services in 15 hospitals in Scotland and England, and how the platform could vastly improve diagnosis and care for people with epilepsy.

Deciding whether a change in behaviour, funny turn, collapse or a seizure is an epileptic seizure or one of the hundreds of other episodes that can mimic seizures, is not easy. Traditionally, diagnosis has relied on taking a detailed story of an event from the affected individual and an eyewitness. Finding an eyewitness is often not possible and witness statements are not always reliable.

The gold standard test for epilepsy has been, and remains, the video EEG. A recording of the abnormal electrical signals of an epileptic seizure is combined with a video recording of the change in behaviour the seizure produces. However, this test is expensive, requires specialist interpretation, and is only practical if seizures are occurring a few times a week.

For many years patients and carers have been bringing videos of events suspected to be epileptic seizures to hospitals on their video cameras, phones, USB sticks, or emailing and even setting up private social media sites to share the video with the hospital. Families and people with epilepsy have been pro-active in using video but hospital services have been slow and cautious about accepting these videos. Medical professionals and hospitals have had reasonable anxieties about security, storage, and confidential transfer of videos such that barriers have been put in place. These restrictions can prevent epilepsy specialists from easily viewing and storing patient videos.

The COVID-19 pandemic helped us persuade the Scottish NHS that we needed to harness the potential of the powerful computer and video camera most of us carry in our pocket: a smartphone. We wanted to know whether we could use this technology to support remote care and aid diagnosis when we couldn’t see the patient in the clinic. We were fortunate in that our hospital’s neonatal unit had developed a secure video transfer system so that nurses could take videos of babies and send them to the parents when they couldn’t be in the hospital. This service, vCreateNeonatal went through all the security requirements to be called ‘NHS Trusted’. When we asked if we could use the same platform to send videos the opposite way, patient to hospital, the clinical governance barriers were finally overcome. In partnership with vCreate, we designed and piloted the secure cloud-based video transfer and management system called vCreateNeuro. Patients and families register for the system with a secure password and passcode, much like online banking. As well as uploading a video,  patients answer a series of questions, providing important information to help the clinician assess the video. The clinician can then classify the video and communicate directly with the family through the system.

This Epilepsy Research UK Innovations in Healthcare funding will allow us to undertake health economic analysis of the service and interviews with patients and doctors to assess how the service improves epilepsy care.

This system has transformed the way we use video in our clinical practice, making it so much easier for patients to send footage, and for us to assess and review it together with colleagues. All the videos are securely stored in the cloud so that they can be accessed from any device. We also have found unexpected benefits beyond more rapid diagnosis, saving on tests and reduced clinic appointments. Families say they feel more connected to the team and we feel more empathy for patients as we see the impact of seizures in the home environment. We have a sense that we are more cautious about increasing anti-seizure medication as we recognise that even in people with established epilepsy, new events may not be seizures. This Epilepsy Research UK Innovations in Healthcare Award will allow us to provide evidence to support our clinical impressions.

We have been fortunate that 15 major epilepsy services in Scotland & England have already agreed to participate in the pilot project and Epilepsy Research UK funded research. With the potential for a database of many thousands of videos, Epilepsy Research UK is supporting us to begin the process of testing whether smartphone videos can be used to develop machine learning programmes to allow automated diagnosis of epileptic and non-epileptic events. This could have a significant international impact on epilepsy diagnosis particularly in remote and resource-poor parts of the world.

-Professor Sameer Zuberi

Read more about Professor Sameer Zuberi’s project ‘Evaluation of a new clinical service to allow video-sharing and remote care for people with epilepsy’ here.