AN INNOVATIVE CARE MODEL
A Neurologist of the World Takes Her Practice — and a Virtual Epilepsy Project — to the Himalayas
ARTICLE IN BRIEF
The article features the efforts of Farrah Mateen, MD, PhD, to improve access to neurological care in Bhutan.
Bhutan, a remote kingdom in the Himalayas, has no full-time neurologists to serve its population of nearly one million people — which is why Farrah Mateen, MD, PhD, a neurologist at Massachusetts General Hospital and Harvard Medical School, has been shuttling back and forth from Boston to Bhutan for the past year. Dr. Mateen, who chairs the AAN Global Health Section, is leading a multinational cadre of health care professionals and software experts in a two-year program, the Bhutan Epilepsy Project, to improve access to neurological care.
The project aims to test whether brain waves can be recorded and saved to a smartphone and then transmitted anywhere in the world for neurologists to reach a diagnosis or monitor care from afar. It also seeks to determine whether a smartphone electroencephalograph (EEG) can serve as a screening technique or stand-alone diagnostic tool for people with epilepsy, coma, and encephalopathy in settings without neurological expertise. The smartphone EEG program is intended to be simple to use, so that community health care workers in rural and remote areas can successfully administer the test with minimal training.
On her most recent trip to Bhutan, the assistant professor of neurology arrived with half a dozen collaborators from three different countries, their suitcases heavy with three EEG machines, smartphones, and laptops, and the hope that citizens suffering from seizures would show up for testing.
Dr. Mateen and her team arrived at the Jigme Dorji Wangchuck National Referral Hospital in Thimphu, the capital city of Bhutan. They were met by local collaborators including research assistants and Bhutanese psychiatrist Damber Nirola, MBBS, who is currently responsible for managing most of the country's epilepsy caseload.
Working with Chencho Dorji, MBBS, the first modern psychiatrist in Bhutan who has since relocated to Australia, Dr. Nirola has developed a registry of locals being treated for seizures. The Bhutanese team recruited participants from across the country, some of whom had to travel for more than a day to reach the capital.
In a small room at the hospital dedicated to the project, the team found a relic EEG device — unplugged, dusty, and not functional. They unpacked their bags and began to set up their imported EEG laboratory, preparing for what they hoped would be the beginning of several busy weeks of study visits and testing, and the operationalization of a long-term project.
To their surprise, more than a dozen participants crowded the halls of the hospital each day, patiently waiting for their turn to be tested with standard and smartphone EEGs. Each of the more than 100 participants who arrived over the first two weeks were tested with both a smartphone EEG and a stationary EEG, as well as other testing related to seizures. Very few had ever received an EEG before; the nearest EEG services are in India.
Dr. Mateen, who has dedicated her career to bringing neurological care to people in resource-limited regions of the world, said Bhutan is the perfect place to test the possibilities of this technology. “The great unmet need for diagnostic testing, lack of neurologists and technicians, largely rural population, and the Himalayan remoteness pose precisely the challenges the technology could help address,” she said.
Local health care workers were trained to use the devices so that when Dr. Mateen and her colleagues return to the United States, people with epilepsy could continue to access a higher level of care.
“It is important that we work together with local physicians and health care workers to make sure that they have access to the technology independently of our work,” said Dr. Mateen. “We believe if this technology can be developed here in Bhutan it can most likely be implemented and offered in other countries where it is similarly hard to access health technologies. Many people live rurally, and the hope is that health care workers could travel to remote places and patients will be able to get an EEG recording to send to physicians, both local and virtual, for analysis and guidance for treatment.”
At present, there are no specialists in Bhutan who can interpret an EEG recording, and diagnoses are made based on clinical evaluation, usually by psychiatrists. EEG recordings are valuable to help characterize the type of seizure and direct appropriate treatment. Dr. Mateen has recruited colleagues at the Mass General to interpret the EEGs; they want to determine whether the same diagnosis can be reached based on recordings from both standard and smartphone EEGs.
The smartphone EEG was developed by software expert Lars Kai Hansen and his colleagues at the Danish Technical University. The mobile unit resembles a shower cap outfitted with a dozen round electrodes and wirelessly transmits brain waves to an adjacent smartphone. In addition to rolling out the device in Bhutan, the smartphone EEG is also being tested in Denmark and at the Mass General.
The idea for the Bhutan Epilepsy Project was sparked five years ago during Dr. Mateen's residency, when she began corresponding with Dr. Dorji and learned of the lack of neurological expertise in the country. The program is supported by a mental health seed grant from Grand Challenges Canada, funded by the government of Canada, as well as the Thrasher Foundation, and will run for two years. The research team has enough funding to cover 75 children and 125 adults, but they know that they will be seeing more than just 200 patients. When the international team leaves Bhutan, the state-of-the-art equipment will stay behind so that local health care workers will have the tools and the training necessary for proper diagnosis and seizure classification.
“The truth is there will never be enough neurologists to meet the demands of patients in developing countries,” said Dr. Mateen. “But if we can train local primary care doctors and related health providers, that will be of enormous benefit for patients.”
In November, she will return to Bhutan with a senior epileptologist from the Mass General, as well as epilepsy and neurocritical care fellows, an EEG technician, and a senior neurology resident.
Dr. Mateen has traveled to 30 countries to understand the landscape of neurological diseases around the world. For now, she has set down roots in Bhutan to complete the project, which is still recruiting participants. Pelden Dorji, a documentarian who has won international acclaim for his documentaries on Bhutan, is now following Dr. Mateen and her team for his next film.
Farrah Mateen, MD, PhD, first spoke with Neurology Today several years ago about her work to bring neurology across the globe. Read more about her work: http://bit.ly/mateen-nt.