Innovator Spotlight on doc.ai: Sam De Brouwer

Epilepsy News From: Monday, January 06, 2020

Sam De Brouwer is the co-founder of doc.ai. Recently, doc.ai launched an epilepsy digital health trial to test how artificial intelligence (A.I.) might be able to help identify the right treatment for the right person at the right time. We sat down with Sam to learn a little bit more about what inspired her to co-found doc.ai and her own personal connection to epilepsy.

How are you connected to epilepsy?

My youngest son, Nelson, had a traumatic brain injury when he was 5. At the time, he was obsessed with superheroes and wanted to fly. I will never forget that Saturday. He jumped out of a three-story window to test his abilities. We rushed to the hospital immediately, but the fall had damaged the left and frontal side of his brain. He has had epilepsy ever since.

Nelson Doc.AI
Nelson in 2016

How did life change for your family?

In the hospital, they put him in a medically induced coma to stabilize his brain on top of the surgery. The doctors told us that his brain was constantly on fire, and he was given anti-seizure drugs right away.

When Nelson woke up from his coma half paralyzed and unable to speak, seizures were the last thing on our minds. We focused on intensive rehabilitation therapy.

My son is an amazing fighter. After intense months of rehab, he could walk but was a bit unbalanced, and he could begin to speak again. As he began to walk, the falls from the seizures were a huge problem. He wears a helmet to protect his head. As he began to speak, that’s when it really hit us. He spoke of the intense fear, anxiety, and shame that he felt whenever he had a seizure.

What did you decide to do?

My husband and I could wrap our heads around rehabilitation. There was a path and we knew what we could do to help. But with the seizures, we felt this big black hole. The trial and error of it all was incredibly scary.

We were in an endless loop, constantly testing whether this new medication would get his seizures under control, whether the dosage had to be adjusted, etc. There were also some terrible side effects that we had to work through.

Data was our lifeline to hope.

Our son was fighting to get better, and we knew that we needed to fight too. Our initial approach was to collect data on everything — that was our lifeline to hope. We decided to devote our lives to improving data collection to inform healthcare outcomes. This was in 2005 and the smartphone hadn’t come out yet. We initially thought about building a research center, but then the smartphone came and that changed everything.

What do you mean?

My husband recognized the potential right away. He is a huge "Star Trek" fan. He thought, what if we could put sensors on the phone to get the information necessary for healthcare needs just like the tricorder in Star Trek? We moved to Silicon Valley and began to support hardware sensor development for the medical community. As access to data improved, as the machine learning algorithms became easier to access, and as technology became cheaper, we decided that we would switch our attention to software development. That was when we founded doc.ai.

What is doc.ai?

Doc.ai is a platform to test digital health trials. We want to enable users to take control of their own health data to develop precise, personalized models that could help them predict and change future health outcomes.

When we started this company, we began to hunt for an epilepsy project to take on. When I was talking to my son’s neurologist, he mentioned that his research team at Stanford wanted to develop algorithms that could find optimal drug options for those living with epilepsy. There are over 25 different drug options for epilepsy, and they can be combined in multiple ways to create hundreds and thousands of different strategies. We knew this journey all too well. My son often asks me to “do something for epilepsy,” and this was my opportunity to say that I am doing something for epilepsy. I told his neurologist that I don’t know if we can solve the optimal treatment question, but we can certainly try.

This was my opportunity to say that I am doing something for epilepsy.

Is there anything else that you would like to add?

There are a lot of people living with epilepsy. Use the Epilepsy Foundation and your local community to learn more from each other.

Remember that you are not alone. It is going to be a scary journey but don’t ever settle. Hang in there. Sometimes it is going to suck and there are no words that could make it better — but please don’t give up.

Also, medical research needs us to volunteer. Whether it is for the doc.ai digital health trial or other trials, please volunteer if you are able. Because only through research can we improve the healthcare options for future generations.

How is your son doing now?

My son is 20 now. It has been 15 years, and his brain is still always on fire. His seizures are better managed. We have them down to 8 to 10 a day, and they are smaller than before.

He has always been a fighter and is not giving up. He is my superhero.

Authored by

Sonya Dumanis PhD

Reviewed by

Epilepsy Foundation Research

Reviewed Date

Monday, January 06, 2020

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