The staff epileptologist at Cleveland Clinic’s Epilepsy Center discussed the current state of seizure tracking applications, their limitations, and their untapped potential to be integrated in clinical care and with electronic medical records.
There were a number of notable presentations at this year’s American Epilepsy Society (AES) Annual Meeting, December 3-7, in Chicago, Illinois, including one by Jessica Fesler, MD, MEd, who posed the question about whether seizure tracking applications are truly effective. As technology has improved over time and the use of smartphones has boomed, the potential role of these apps has never been greater. Most of these seizure tracking apps include seizure diaries, where patients can record and keep tabs on when they experienced seizures.
Seizure apps can help patients adhere to their treatment regimen by providing reminders for when to take medications, as well. Fesler, a staff epileptologist at Cleveland Clinic’s Epilepsy Center, sees an immense amount of untapped potential with these apps; however, she believes there are several barriers that limit their possible use. Her presentation, like many others, challenged the community to find ways of improving these apps and their capabilities.
NeurologyLive® caught up with Fesler at AES 2021 for a new iteration of NeuroVoices, where she provided an overview on the questions that need answering, the advantages and disadvantages of the current apps, and whether the pandemic has had any influence on how they’re used. She also stressed the need for integrating technology like this with the medical health record system and how it could eliminate extra workload for clinicians.
Jessica Fesler, MD, MEd: My talk is all about how we help people with epilepsy live better lives, specifically, using the tools we have. What’s new out there? What are different ways besides our traditional treatments? My topic specifically focuses on how seizure apps help—seizure apps meaning applications on smart devices. What do they do? How can they help? The point of the talk, although short, is to talk about how these apps can help us better in the future. What’s the potential there? What gaps do we have? How can we push things forward? What’s on the horizon? What new things are happening and where are things going?
The advantages are, first, that they’re convenient. We all know how prevalent smartphones are. There are about 8 billion people in the world and about 4 billion smartphone users estimated out there. Lots of people have them, it’s not doubt that they’re all over the place. They’re accessible, they’re there all the time, and it’s not something you have to remember [to use]. A lot of what the current seizure apps do is help people remember things—track things—track seizures, track medications, and remind them to take them. As you can imagine, if someone has a pencil and paper calendar, they might forget it when they show up to a clinic. People very rarely show up without their phone. Being more accessible in general is the big benefit.
The other thing is that if you write something down you have to remember everything. But a lot of the apps will timestamp things. If you enter it into their system, it will remember the date and make things easier for you for you to keep track of your seizures. Seizure diary functions are among the most common features we see currently available in these apps.
The disadvantages? More than a disadvantage, I think, is people would talk about the barriers. Seizure apps are not used widespread by a lot of people. One of the reviews out there that looked at the most commonly used apps in 2018 showed that they were downloaded by about 10,000 people, which sounds like a lot, but not when you think about the 50 million people with epilepsy. Percentage wise, we’re not moving the needle much. There are many barriers, too. One is the concern about privacy and security of data. I think there are a lot of issues with that.
Second is that a lot of the development of these apps are not driven by healthcare professionals. They’re consumer driven or driven by industry or things like that. There’s a concern about misinformation or maybe not being current adherent to the guidelines and things along those lines.
One of the other barriers is that there’s not an app that does everything. We see many apps that have different features, but there’s not one comprehensive “one-stop shop” app that you can go to and have all the different features you want. Additionally, we all know apps can be glitchy and sometimes don’t work the way we want them to or work consistently enough on the device we have. There’s a lot of issues with data fluency and depending on everyone.
Well, there’s just not a lot of data. There’s always a time lag. The most recently published study is from 2018, so this is prepandemic data that we have, so I don’t think it will have a good use. If we extrapolated, we would assume it’s gone up, but you can’t tell that for sure. We absolutely know that virtual health is a big thing.
One of the things with seizure apps is there’s a lack of integration with our healthcare system and our medical records. That’s one of the things that I think it [seizure apps] will help. But, that’s one of those things we need to give a chance to make a difference. We could use the apps to be a communication tool with healthcare providers and the healthcare team. Integrating it with the medical health record would be an area it can help improve.
Now that we’re doing virtual visits, if we could integrate all of that together and make them talk to each other, that would be a step in the right direction. One thing AES did in 2018 was put out a consensus statement on common data elements. What that means is it’s sort of a collaboration with industry, clinicians, and researchers to get on the same page, the same language, so that the apps and technology can talk. That way, we can move forward together and progress things even more. I think it was a big step to just get on the same page and start to work together so that we can help our patients out even more.
Transcript was edited for clarity.