Fondation Pierre Fabre

To provide smartphone-based EEG diagnoses to children with epilepsy in Guinea using an open-source app

Main beneficiary countries:
Guinea - Bhutan - Peru

About the sponsor

Massachusetts General Hospital Global Neurology Research Group

The Global Neurology Research Group is dedicated to finding practical and cost-effective solutions to meet the neurological needs of individuals in developing countries. Neurological disorders such as epilepsy, stroke, dementia and traumatic brain injuries are more common in low- and middle income countries, where 86% of the world’s population is concentrated. These neurological disorders can be disabling both physically and mentally, and there is a high human and economic cost associated with them. Many of these diseases come with a stigma attached since they are often misunderstood. Compounding this problem is that many of these diseases are not well diagnosed or treated due to a lack of trained neurologists and limited access to medical care in these settings. When last studied, there were 12 African countries with no neurologists, and an additional 23 countries with a ratio of one neurologist to more than five million people in the population. The Global Neurology Research Group at Mass General works on projects designed to improve the diagnosis, care and treatment of neurological diseases in these resource-limited settings.

Sector: Academic entities: Universities, research laboratories, etc.

Country of origin: United States

The organisation has:

5
Full-Time Equivalents
7
Employees
30
Volunteers
0
Service provider

Initiative overview

Healthcare themes targeted

  • Mother and child health
  • Infectious diseases
  • Mental health

Stage of development:

  • Pilot project/testing/trials

Area where initiative is utilised

  • International (in several countries)

Initiative start date

  • 06/01/2017

Financing

Financing method

  • Public (grant/subsidies, call for proposals/call for tender, etc.)
  • Private (private investors, crowdfunding, philanthropy, etc.)
  • Government agency (i.e AFD, USAID, etc.)

Economic model(s)

  • Donations

About the initiative

Epilepsy occurs predominantly in low and middle income countries, affecting ~1 to 2 percent of the global population or 60 million people. The number of people with epilepsy in lower income countries who access care is generally low due to multiple factors: a higher level of poverty among people with epilepsy, a dearth of specialized healthcare workers, stigma impacting care seeking behavior, limited access to health techologies, fewer antiepileptic drugs including medication "stock outs," and seizure related limits on transportation to receive care. It is also likely that unique, understudied risk factors for epilepsy exist in lower income settings, changing the epidemiology in these locations. These putative risk factors have not received full attention due to a lack of brain focused technologies to research their impact. Although access to EEG is a standard of care in high income countries to classify seizures and spell types, support the diagnosis of epilepsy, and help direct medication choice, it is often unavailable, inaccessible, and unaffordable in low income settings. Moreoever, many countries do not have a single practicing neurologist or have one per several million people. Availability tends to be centralized in large academic centers, and the cost of a traditional EEG machine usually exceeds 20,000 USD.

The Smartphone Brain Scanner-2 (SBS2) is a multi-platform software application that combines off-the-shelf EEG caps with a smartphone or tablet, representing a fully portable, real-time EEG imaging system.

The software is open source, available under a free MIT license (https://github.com/SmartphoneBrainScanner).

The underlying technology extends C++ programming language (Qt) and is supported by desktop operating systems (Windows, OSX, Linux) and mobile devices (Android, BB10, partially iOS).

Compatibility of the app has been developed for two neuroheadsets, Emotiv and EasyCap. Each EasyCap headset can be purchased for approximately 100-150 USD and is reusable. All recordings are stored on the device and can be sent by a low file-size email to an epileptologist who is remote from the site of patient data collection.

The use of a diagnostic smartphone app for EEG goes beyond existing uses of mHealth for neurological disease which to date have been scant and focused on text messaging, reminders, electronic data entry, and automated diagnostic guidelines. The SBS2 allows the use of EEG in new populations in remote locations, building on the strengths of its mobile design. Only recently has computing power been capable of putting signal processing from a brain-computer interface on a smartphone. SBS2 thus obviates the need for electricity, paper tracings, and skilled EEG technicians for lead placement, existing barriers to EEG use in LMICs, and barriers otherwise beyond the capacity of the individual clinician to fix. Smartphone-based EEG also provides automatic data saving and high-volume file storage as well as real time EEG viewing for up to 12 hours. This allows diagnostic technologies to be brought to the patient rather than requiring the patient to travel to the diagnostic center. It allows home-based seizure detection and monitoring in persons with immobility. SBS2 could be used in intensivecare units, emergency departments, and remote, basic health units. EEG data files from SBS2 can be easily saved and emailed to a neurologist remotely.

The project aims to implement a low cost, smartphone-based electroencephalogram (EEG) to aid in epilepsy diagnosis and treatment decisions in Guinea. We also determine the burden of epilepsy and quantify the prevalence of risk factors, seizure-related injuries, and traditional medicine use in the goal to destigmatize epilepsy and encourage therapeutic options in epilepsy care. The Republic of Guinea is a small country in West Africa with a population of 12 million that most recently was in the news for the 2014 Ebola outbreak. The capital city, Conakry, has a population of 1.7 million, and is the main urban center and port city for the country. The project is taking place at Ignace Deen Hospital in Conakry, a large academic public assistance hospital and one of two teaching hospitals of the local university.

July 2017: The research team saw 133 patients, around one third of whom were children, over a week at Ignace Deen Hospital, providing epilepsy consultations, making medication recommendations, and supplying free medications and folic acid. Radio TV Guinea interviewed the team about the project, care being provided, and causes of epilepsy on several occasions.

November 2017: The research team saw 141 pediatric epilepsy patients over two weeks at Ignace Deen Hospital, providing standard and/or smartphone EEGs, consultations and anti-epileptic medications free of charge. Many patients had seizure-related injuries including severe burns and most had experienced >100 seizures in their lifetime. Very few patients had received an EEG, CT, or MRI as part of their care, and many patients chose to seek out alternative treatments for their seizures.

This project aims to improve diagnosis and treatment for epilepsy patients in Guinea through this open-source EEG app and headset. It also occurs in Bhutan and Peru.

Field report of the initiative

Fields of application:

Health professional training - Telemedicine (remote diagnosis and consultations) - Information, education and communication for behaviour change (IEC) - Patient monitoring and medical data

Target audience

  • Healthcare professionals and structures (hospitals, healthcare centres/clinics, health networks)
  • Dependents/persons with disabilities
  • Children - adolescents (ages 6-18)
  • Young children (0-5 years)

Initiative objectives

  • Decreased mortality
  • Decreased morbidity
  • Reduced suffering
  • Improved treatment

Key figures

625 Number of beneficiaries since launch

300 Number of users per Year

Materials used

  • Smartphone
  • Tablet
  • Computer
  • Connected objects

Technologies used

  • Mobile telecommunications (without data connection)
  • Internet
  • Mobile app (Android, iOS, Windows Phone, HTML5, etc.)

Offline use

Yes

Open Source

Yes

Open Data

No

Independent evaluation

No

Partners

Ignace Deen Hospital, Conakry, Republic of Guinea

Academic entities: Universities, research laboratories, etc.

Jigme Dorji Wangchuck National Referral Hospital, Thimphu, Kingdom of Bhutan

Academic entities: Universities, research laboratories, etc.

Danish Technical University, Copenhagen, Denmark

Academic entities: Universities, research laboratories, etc.

Massachusetts General Hospital, Harvard University

Academic entities: Universities, research laboratories, etc.

Partners

Collaborators

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