Population Health Insights

One Father’s Journey to Hack Better Care for His Epileptic Daughter

Last year, Intel-GE Care Innovations hosted its first-ever Hackfest to discover more ways to make profound and practicable connections between health providers, patients, and caregivers outside the clinical setting. One participant, Colin Maccannell led his team to develop an app that not only tracks patient data, but also tracks the often-overlooked well-being of the caregiver. He took a few moments to tell us the amazing story of how his daughter’s chronic disease inspired him to begin his Hackathon journey.

Tell us about what got you to where you are right now.

Maccannell: So, I’ve had a bit of a windy road.  About seven years ago my daughter was diagnosed with severe epilepsy.  

…Epilepsy is a really harsh thing.  My daughter has been on 14 different medications that didn’t work, she’s had a corpus callosotomy where they split her brain to stop one type of her seizures.  She’s been through pretty much every therapy and they just didn’t work.  

At the time she was diagnosed I was actually a construction worker--a general contractor--and I was trying to figure out a way to track her seizures better because normally the doctors would give you a sheet of paper and you’d fill it out, but I thought there’s a lot more data surrounding that. So, I taught myself Android development and wrote an app to log her seizures.

I liked it so much that I went to school and got a computer science degree.  I spent over five years working on this seizure app and advancing it.  That led me to a lot of interest in digital health in general. I heard about the Hackathon with GE and Intel, so I went to that because I was a solo person trying to build a product myself.  

Collin_and_daughterWhat’s one of the things you’ve gained from attending the Hackathon?

Maccannell: One of the biggest things I gained was validation by talking to all the reps at Intel-GE Care Innovations.  I especially had a long talk with Sean Slovenski (CEO of Care Innovations) and seeing how much interest there was in our product and our project…gave me a driving force to move forward on it.  Of course, I also learned a lot about the business, the pitching, and market validation.

What things have you learned from the Hackfest to help you validate your product as something that people will use and need?

Maccannell: At the Hackfest, I spent a lot of time walking around and talking to participants. One of the participants actually had epilepsy, she’s a pharmacist and she had epilepsy herself, so I talked to her about the product and it was like she was waiting for it.  She’s been always waiting for it, like myself and people I know that deal with epilepsy, they’re waiting for something like this to come to fruition.  

Where’s your product right now?

Maccannell: We have a prototype. We’re building [wireless] hardware that you can actually plug it into different parts of your body along with [a Bluetooth] EEG to detect vital signs with the hopes that we’ll be able to predict a seizure up to an hour before using new biomarkers that we discover.

The product we pitched…logged medications and medical events and the data around it, but more importantly we had a sliding scale questionnaire that…asked a couple of questions of the caregiver whenever they were entering data to try and get a gauge of their feelings to determine whether they were getting depressed, getting burned out, or if they needed any kind of support services. Those queries would be delivered to a chosen contact person and a hospital social worker so there could be intervention if needed for the patients.

Where do you want to go from here?  

Maccannell: Our hope is…to launch an iOS and Android version of this and start rolling it out to the general public.  Right now, 200,000 new people [are] diagnosed with epilepsy per year and those are the people who are usually most interested in data.  They’re trying to learn what they or their child was just diagnosed with.  

What advice would you give people that are going to be attending the Hackfest in a couple weeks about how to get the most out of their experience?

Maccannell: Don’t work in a silo. One of the best things…that you get out of these Hackfests is talking to other people, getting insights, even other teammates that aren’t even on your team, that are competition. I’m sure they’ll give you advice, they’ll give you feedback, validation.  You really need to just walk around and mingle in between; take some breaks from your work.

How’s your daughter doing?

Maccannell: She’s actually gone two weeks without a seizure, and she [normally] has 30 to 50 seizures a day, so two weeks is kind of a big record for us. She’s doing really good right at this moment.

Do you think you would still be motivated to do what you’re doing right now if your daughter had never had epilepsy in the first place?

Maccannell: I’ve always had a drive to solve problems no matter what. I was a plumber in the past, so I was solving a lot of problems then. But she was my true inspiration to this.  Before she had epilepsy I didn’t really know that I wanted to be in the health field.  It wasn’t something where I always wanted to be a doctor or something; she was the driving force.

Learn more about Colin's project at biomarkhealth.com

 

Find out more about the CI Hackfest here, and follow #CIHF15 on Twitter.