The Bhutan Epilepsy Project
In this entry specially to mark International Epilepsy Day, Farrah Mateen from the Global Neurology Research Group at the Massachusetts General Hospital Harvard Medical School, describes her study and involvement with The Bhutan Epilepsy Project. Additionally, Jo Mantia, Registered EEG Technician in Toronto, Canada, shares her experiences participating in the project.
The Bhutan Epilepsy Project is a prospective study of people with seizures and/or epilepsy in the Kingdom of Bhutan. Bhutan is an extraordinary country, steeped in mesmerizing traditions and a rich, inviting culture. Bhutan is also an excellent place to introduce "disruptive technologies" for health, given its lower economic status. In our cohort of participants, 99% of patients have a mobile phone. This number exceeds the number of mobile phone owners in Canada and lends itself well to new mHealth approaches for epilepsy.
Several people ask me "Why Bhutan?" Bhutan was chosen for several reasons. The first is the absolute need for epilepsy services and care. There is no neurologist in Bhutan and Dr. Damber Nirola, Head of the Department of Psychiatry at the Jigme Dorji Wangchuck National Referral Hospital, has become an expert in epilepsy and takes care of most adult patients with epilepsy on a referral basis. There were previously no EEG technicians or working EEG machines in Bhutan. Bhutan thus represents several countries worldwide in which epilepsy services could be improved. Second, Bhutan has a rugged terrain and a high number of rural dwellers. People with epilepsy often have difficulty with transportation, either because they are unable to drive or do not have the same employment opportunities to pay for travel. Third, there is reason to believe the burden of epilepsy in Bhutan is high due to the burden of neurocysticercosis, a parasitic cause of epilepsy, and other reasons such as a high rate of preterm birth in the population and genetic influences.
Our team - The Bhutan Epilepsy Project Team - is actively engaged in characterizing and diagnosing seizures in Bhutanese patients, from newborns to the elderly. Since epilepsy is commonly misdiagnosed, stigmatized, and may be difficult to detect, we are employing a new mobile phone app (designed by my collaborator Arkadiusz Stopczynski, PhD, MIT & Danish Technical University) in the diagnosis of epilepsy. This project is in collaboration with Dr. Nirola and made possible by Lhab Tshering BSc and Sonam Deki BComm, research coordinators and data managers at the Jigme Dorji Wangchuck National Referral Hospital. We also thank Dr. Dechen Nidup who is the expert radiologist working on MRI brain correlations for people with epilepsy, Dr. Tshokey and Ms. Sonam Paydon in the Department of Pathology, and our many other collaborators in Bhutan as well as in Denmark, USA, and Canada.
The Bhutan Epilepsy Project has recruited more than 200 participants and is on its way to reaching 300 in March 2015. As Jo Mantia mentions below, we were proud to perform the first neonatal EEG in the country and hope we can extend our services to the most vulnerable people and places. We are in the second year of the project and are keen to continue our project for the longer term in Bhutan and beyond. Here's hoping!
Farrah Mateen, MD, PhD
Global Neurology Research Group: Massachusetts General Hospital, Harvard Medical School
Toronto to Thimphu
I had the pleasure of spending 3 marvellous weeks participating in The Bhutan Epilepsy Project (funded by Grand Challenges Canada through the Government of Canada), where I connected with a group from Harvard led by Dr. Farrah Mateen.
I am quite a seasoned technologist and brought with me more than 25 years of experience in the treatment of epilepsy in paediatric and adult patients.
I accepted the challenge and traveled to Bhutan, a country I knew very little about. I was greeted by an amazing team who had a common goal: "aid" this landlocked country by undertaking EEGs to diagnose epilepsy, in the hopes of improving outcomes for patients.
The patients were kind and appreciative. If they did not speak English, their smiles were infectious and you soon understood how grateful they were for the team’s presence. My job was to perform standard EEGs and soon enjoyed helping with the mobile phone EEGs as well, which were performed on outpatients. The days were busy and at times challenging but extremely rewarding.
Word got out to quite quickly to units in the hospital that The Bhutan Epilepsy Team was in the building. A request came in to carry out an EEG on a term neonate on life support to rule out subclinical status epilepticus. We packed our EEG system and found a cart to transport it to the adjacent main hospital building. This resulted in the first neonatal EEG performed in the Thimphu Neonatal Unit! It was quite gratifying to make history in Bhutan!
On a personal note The Bhutan Epilepsy Project was both rewarding and educational. I have made new friendships and cannot wait until I can return.
Jo Mantia, Registered EEG Technician
Learn more about International Epilepsy Day 2015
Innovation: The Bhutan Epilepsy Project