Increasing system capacity for autism diagnosis through ECHO Ontario Autism

By Salina Eldon

Approximately one  in 66 Canadian children are diagnosed with autism spectrum disorder (ASD). The increase in prevalence of ASD has meant that clinicians have had to adjust their thinking around what was once considered a rare disorder. ASD remains a complex neurodevelopmental disorder whose etiology is not yet fully understood. Without an objective biomarker to aid in diagnosis, the identification and diagnosis of ASD is primarily based on information from family report and systematic interactive observations of the child.

The legacy of ASD diagnostic assessment is one of limited access to speciality evaluations in tertiary centres that tend to be located in more urban areas. However, this model no longer meets the system’s needs based on the high prevalence of ASD. Building capacity for community-based diagnostic and care models is now essential to providing timely care to children with ASD and their families. Last year, Holland Bloorview Kids Rehabilitation Hospital began to implement the Extension for Community Healthcare Outcomes (ECHO)™ model to address the need for a wider reach in knowledge sharing and to play a role in advancing the diagnosis and treatment of ASD.

What is the ECHO model?

Developed in New Mexico by Dr. Sanjeev Aurora, the ECHO approach is an “all teach, all learn” model. It combines medical education and care management in a way that de-monopolizes specialty knowledge, providing clinicians in rural and underserved areas the skills and capability to care for patients with complex conditions.

Using inexpensive video-conferencing technology, ECHO links expert specialist teams at an academic ‘hub’ with primary care clinicians in local communities. The interactive video-conference sessions – accessible by smart phone, tablet, laptop, or a computer with a webcam – combine didactics containing information on relevant topics, along with mentoring and de-identified patient case discussions.

What is ECHO Ontario Autism?

“Through ECHO Ontario Autism, Holland Bloorview provides community practitioners with the knowledge and support they require to diagnose and manage the symptoms of ASD in their own practice,” says Dr. Melanie Penner, developmental paediatrician and clinician investigator – Autism Research Centre, Holland Bloorview. “This enables families to receive care in their own community instead of having to travel long distances for tertiary care.”

In addition to Dr. Penner, the ECHO Ontario Autism hub team at Holland Bloorview includes Dr. Evdokia Anagnostou, child neurologist and senior clinician scientist; and Dr. Jessica Brian, psychologist and clinician-investigator – both celebrated names in their field. Other members include an occupational therapist, registered nurse, behaviour therapist, and family advisors who are parents of children with ASD. Including the family perspective is what makes this model in Ontario unique, and is a testament to Holland Bloorview’s ongoing commitment to involve families in all aspects of program, service and care development. The parent advisors provide insight on areas including system navigation and how doctors can better communicate with families.

“…I want to reiterate that in 38 years of doing CME in practice settings, ECHO has been far and away the best  – and most carbon neutral – that I have had the pleasure of doing…it truly augmented the value and pleasure of working in a community practice setting,” says Dr. Anthony Ford-Jones, paediatrician.

The program, which is fully funded by the Ministry of Health and Long-Term Care, has offered 18 video conference sessions since October 2018, with a total of 50 participants across 26 geographic locations. The majority of participants are paediatricians, however additional primary care providers, such as family doctors and nurse practitioners, are also involved. ECHO Ontario Autism is a self-approved group learning activity as defined by the Maintenance of Certification (MOC) Program of the Royal College of Physician and Surgeons of Canada (Section 1), and MOC credits can be earned.

For the remainder of this summer, ECHO Ontario Autism is holding a pop-up series open to physicians, nurse practitioners and allied health professionals. Each session includes a didactic of the day’s topic, which were based on suggestions from participants, followed by discussion and questions. This September will see the start of cycle 2 sessions, continuing until May, and targeted at health professionals who diagnose ASD. For more information on how to sign up, visit hollandbloorview.ca and search for ‘ECHO Autism’.

Salina Eldon is the project manager of ECHO Ontario Autism at Holland Bloorview Kids Rehabilitation Hospital