1 in 26: How Wearables Could Improve Epilepsy Odds
The more people I talk to, the more excitement I hear in their voices when I ask about wearables and health care. This past week I spoke with Tom Stanton, executive director of the Danny Did Foundation, and Rosalind Picard, chief scientist at Empatica and professor at MIT.
Picard has been working with wearables before wearables were on the radar. In the 1990s, people had no idea how to spell the word, let alone what it had the potential to become, she told me.
“[Wearables is] going to be a bigger revolution than the desktop personal computer,” Picard said. “I think it’s going to enable truly personalized health care in medicine and improvements that show individual variation and the ability to truly serve the individual.”
Although Stanton thinks there has been enthusiastic reception from consumers, he doesn’t feel wearables have been embraced by the medical professions—at least, not yet. “There are lots or reasons to be excited about wearables, but for them to be fully utilized and fully effective from a medical standpoint, I think the acceptance, understanding and trust need to grow among health care professionals.”
But Picard and Stanton have more in common than an excitement for wearables. Together, they are working to improve outcomes in epilepsy, which affects one in 26 people in the United States alone and 65 million worldwide. Looking deeper, one out of 1,000 people with epilepsy die from Sudden Unexpected Death in Epilepsy (SUDEP). Those numbers may increase to as much as one in 150 in people whose seizures are poorly controlled. One of the biggest problems is that “no medication, surgery or other form of epilepsy treatment has been proven to prevent SUDEP,” Stanton told me. “There’s progress to make on all fronts.”
“R” is for Resource
Early intervention and prevention is critical when it comes to epilepsy seizure safety, and there are resources for spreading that message. For example, the Danny Did Foundation, which was started after Mike—Tom Stanton’s brother—and Mariann Stanton lost their son Danny to SUDEP, is dedicated to preventing deaths caused by seizures. In fact, a large focus of the foundation is geared toward home-use technologies that sense seizure activity and sound alarms when a seizure occurs, offering the opportunity for parents and loved ones to be able to address the seizure. It helps families, patients and practitioners become aware of gadgets and technologies. For example, the foundation may point someone who suffers from epilepsy to devices that measure for repetitive, consistent movements lasting for a defined period of time. When that happens, the gadgets send an alarm, Stanton said. For example, the SAMi Alert and Emfit Movement Monitor scan for movements during sleep, an especially vulnerable time to have a seizure. Others, like the SmartWatch and Embrace, another so-called smart watch, feature mobile monitoring and can be worn around the clock.
But what happens if someone is suffering from a complex partial seizure, where there are no convulsions? Complex partial seizures increase the risk of SUDEP and a new device such as the one from Empatica may lower those risks. Right now, Empatica touts its Embrace watch as a detector of motion and autonomic changes, since it has to go through the FDA dance before it’s marketed for seizure monitoring.
In fact, Empatica has two epilepsy-related projects underway. One is the E4 wristband used by researchers, clinicians, scientists, academics and companies. It aims to gather data on conditions including epilepsy, autism, PTSD, depression and anxiety, problems where medicine has made little progress in the last 50 years, Picard said.
The Embrace will be available to the general public this fall. It’s available for sale on Indiegogo.
In the meantime, researchers continue to try to make a device that will actually prevent epilepsy. That could take a while.
What does the future look like for seizure wearables? Stanton thinks they will be multi-module devices that monitor for a range of seizure indicators--not just movement, but changes in respiration, heart rate, skin conductance and body temperature. The next generation will work not just to alert to seizure activity, but to also predict it, so that the wearer can get themselves into a safer place, such as stopping the car he’s driving or getting out of the pool in which she’s swimming.
Physicians should climb on board with the latest trends in epilepsy wearables to try decreasing the risk of SUDEP. There seem to be no drawbacks to recommending patients monitor their epilepsy via one or more of these new devices. Although they don’t prevent SUDEP, they are a start to making sufferers’ lives better.
The simple knowledge that a wearable can alert a parent to a sleeping child’s seizure should be reason enough to promote such gadgets.
Come on, doc—learn, accept, take a risk. You and your patients will be better for it.
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