(Editor’s note: This post was written by Sarah Clark, a project manager at Massachusetts General Hospital working with the Global Neurology Research Group led by Farrah Mateen, MD, PhD. Clark is pictured below at left, Mateen at right.)
“I recently had the amazing opportunity to travel to Bhutan to work with epilepsy patients for a clinical research study. I’m the project manager for the Global Neurology Research Group, led by Farrah Mateen, MD, PhD, at the Neurological Clinical Research Institute at Massachusetts General Hospital.
With the help of numerous other consultants, volunteers, students and medical trainees,
our group aims to test and implement novel interventions for neurological diseases in low resource settings, such as Bhutan and other countries in Asia and Sub-Saharan Africa.
The purpose of this trip was to enroll Bhutanese patients with seizures for implementation of a smartphone-based EEG system for diagnosing epilepsy.
Epilepsy is a brain disorder marked by sudden, recurrent episodes of sensory disturbance, loss of consciousness and/or convulsions. These episodes are usually associated with abnormal electrical activity in the brain, which can be measured by a stationary electroencephalogram (EEG).
The smartphone EEG was designed by our collaborator, Arek Stopzynski, PhD currently
at MIT. The hope is that the smartphone-based EEG system will be a practical and cost-effective alternative to stationary EEG tests, the current standard of care in high-income settings, and will improve treatment for epilepsy patients who don’t have access to a stationary EEG.
The study is supported by two Bhutanese research coordinators, Sonam Deki and Lhab Tshering, and the study would not be able to function without their great work.
Although I had spent months working on this project and coordinating with our Bhutanese staff by email, doing the work in Bhutan was a completely different experience.
I had already gained a thorough understanding of the need for diagnostic tests for seizures in Bhutan, but now got to experience the impact of our work firsthand. Patients and families traveled from all over the country–trips that can take multiple days–to see us.
Although cell phone use is comparable to what we see in the USA, the Bhutanese were
pleasantly surprised at the ease, painlessness, and almost comedic nature of the “hat that looks at your brain activity.” I assuaged pre-test anxiety by explaining that the worst part is that hair may look messy afterwards, due to the clear, sticky, conducting gel, and this was met with smiles and greater relaxation.
Most patients and family members were extremely grateful and many were also worried. Seizures are scary and often misunderstood, especially in Bhutan where they carry a strong negative stigma.
There are a lot of misconceptions surrounding the cause and treatment of seizures and many patients and families came with questions, such as “Is it true that if he avoids garlic, the seizures will go away?”
To address these common types of misconceptions, as well as the prevalent negative stigma, our team is collaborating with Bhutanese groups to create songs, videos, and posters, in hopes of building awareness and reaching a wide audience.
Although the purpose of the study is to use the smartphone-based EEG system in a lower-income setting so that it can improve things for the future, we were also able to perform stationary EEGs on each patient, the standard of care in the USA, and provide patients with their results.
With these results, patients are able to go to their local physicians and make more informed treatment decisions. Patients are also able to get MRI of their brain through the study, which may also assist treatment decisions.I hope we were able to make a difference, for our current patients and for patients in the future.
Bhutanese are kind and welcoming people and Bhutan is a beautiful country. Spending my time and energy there was a privilege.”
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