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Project ECHO Epilepsy across the Lifespan and the Ontario Epilepsy Genetics Testing Program

Adelina Soares

Epilepsy is well recognised worldwide as a common, complex neurological disorder which places a significant burden on people and society. Uncontrolled seizures severely impact a person’s independence and quality of life and place enormous costs on the healthcare system. In recognition of this challenge the province of Ontario in Canada developed a network of comprehensive epilepsy centers where people can be assessed for available epilepsy treatments including potentially curative epilepsy surgery. They also created and disseminated evidence based clinical guidelines to improve epilepsy care throughout the province. Although this was a significant achievement, unfortunately it wasn’t enough. There was still a need to train frontline health care providers to diagnose and treat epilepsy and also to recognise when to refer patients to a comprehensive epilepsy center.

Project ECHO [Extensions for Community Healthcare Outcomes] has been shown to be a creative answer to this knowledge translation gap. Project ECHO was conceptualized and developed in 2003 by Dr Sanjeev Arora in Albuquerque New Mexico, to increase the capacity for management of patients with hepatitis C throughout that state ( Arora et al 2011). Project ECHO® is an innovative model for medical education that uses ZOOM video-conferencing to connect specialist multidisciplinary teams at academic health centres to community healthcare providers (CHCPs). Using didactic and case-based learning, each ECHO session fosters knowledge among CHCPs that can be translated to the care of their patients. In this way, ECHO creates a knowledge network to move knowledge, instead of patients and expedites the timely delivery of care, where it’s needed.

From 2013 to 2016 the Ontario regionalized system of comprehensive epilepsy care was organized and operationalized by the Ontario Ministry of Health [MOH] in a remarkable partnership with epilepsy care providers, hospital administrators, community epilepsy agencies, and epilepsy patients and their families. Once the system was up and running the MOH, working with the same partners, moved to create Project ECHO Epilepsy across the Lifespan in order to translate best practices of epilepsy care being delivered in the Regional and District Epilepsy Centres in Ontario to front line health care providers throughout the Province [see https://oen.echoontario.ca/ . The ECHO model was seen as an ideal solution to address the needs of people living with epilepsy in Ontario, now even more relevant in 2020, because of the disruptions in chronic disease health care networks by COVID 19.

Project ECHO Epilepsy across the Lifespan uses the same ECHO model as developed by Dr. Arora, described above. It is a virtual, technology based, collaborative partnership between community health care providers and epilepsy specialists that utilizes case-based and didactic learning to enhance care for people living with epilepsy. The adult and pediatric curricula are delivered to community partners [spokes] by hub teams in Pediatric and Adult District or Regional Epilepsy centres across Ontario. Each interprofessional hub is composed of an epileptologist, epilepsy nurse practitioner, social worker, neuropsychologist, community agency representative, and pharmacist connected to the local hub. This whole MOH-funded Project ECHO Ontario: Epilepsy Across the Lifespan system is administered by a central hub, The Hospital for Sick Children in Toronto.

ECHO sessions are interactive, safe learning environments, where participants present patient cases, ask questions and share best practices. Attending ECHO enables health care providers to gain the skills necessary to manage epilepsy effectively and safely. ECHO sessions usually happen during lunch hour, once a week with access via smart device or laptop. They are open, free of charge to health providers in Ontario.

The goal of the project is to build capacity in the community to diagnose and manage epilepsy appropriately, as early as possible. This is in order to reduce unnecessary emergency visits or hospital referrals and life threatening events due to status epilepticus. Benefits of the program include caring for patients closer to home, improved outcomes, patient satisfaction and quality of life. Health care providers have the opportunity to learn about best practices in epilepsy care, including the curative option of epilepsy surgery.

The program has been now been running for 3 years and has received a high level of interest from community neurologists, pediatricians and family physicians. Two thirds of the participants were from these disciplines with the balance consisting of registered nurses, nurse practitioners, pharmacists, social workers, epilepsy educators and psychologists and other allied health professionals. Feedback has been encouraging, as there has been a significant positive change in knowledge, self-efficacy, comfort level, and practice with respect to epilepsy care amongst learners. Providers who presented cases also commented that there was an improvement in the severity or impact of their patient’s illness after implementing recommendations made during an ECHO session. Various types of epilepsy are increasingly recognized as genetic conditions with a significant proportion caused by pathogenic variants in single genes. These are detectable using next generation sequencing gene panels in 15-30% of people living with epilepsy. The Ontario MOH, continuing its partnership with epilepsy care providers throughout Ontario has just announced a new Ontario Epilepsy Genetics Testing Program (OEGTP). All epilepsy genetic testing, which until now has been sent out of country, will be repatriated and performed in the Division of Molecular Diagnostics at the London Health Science Centre in Ontario. In this way, evidence based epilepsy gene panels will be provided for carefully selected epilepsy patients in Ontario.   Physicians who are approved to order these genetic tests for epilepsy include epilepsy specialists and neurologists affiliated with the District and Regional Epilepsy Centres throughout Ontario, Neurologists in the Province with at least six months of training in epilepsy and EEG and geneticists. As well, Project ECHO Epilepsy across the lifespan will inform and educate additional care providers by providing a Continuing Medical Education (CME) certified epilepsy genetics curriculum to Family Doctors, Paediatricians and Community Neurologists . On completion of the course these CHCPs also will be approved by the MOH to order genetic testing for their epilepsy patients. The development and evolution of Project ECHO: Epilepsy across the lifespan in Ontario is illustrative of the breadth, depth, compelling nature, and flexibility of the Project ECHO model as applied to epilepsy knowledge translation. The ECHO model has demonstrated effectiveness in expanding knowledge, self-efficacy and practice change in the delivery of adult and pediatric epilepsy care in Ontario. ECHO shows great promise as a tool to demonopolize epilepsy knowledge and enhance the care of all patients with epilepsy in their own communities. Finally Ontario continues to advance its world leadership in epilepsy care, first with the development and funding of a provincial comprehensive care system, then the creation of Project ECHO: Epilepsy across the lifespan, and most recently the development of OEGTP and our new Project ECHO epilepsy genetics curriculum.


Kevin Jones and Carter Snead

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