Canadian Academy of Health Sciences (CAHS)

Bringing the voices of the autism community to an important planning process

 

Environics Research worked with the Canadian Academy of Health Sciences (CAHS) to support key elements of the engagement process undertaken as part of the Academy’s Assessment on Autism.

 

Background

Environics Research was commissioned by the Canadian Academy of Health Sciences (CAHS) to support the development of a pan-Canadian strategy to better serve the needs of the autism community. ​ Autism is a neurodevelopmental condition that impacts individuals across the lifespan. There is diversity in how this condition presents and evolves over time. Many individuals on the autism spectrum and their families face social and economic challenges that affect their quality of life. About 1 in 50 Canadian children and adolescents (2%) has autism, according to the Public Health Agency of Canada. This rate has increased over time. Less is known about how many adults in Canada have autism. Across Canada, Autistic people – children, youth, adults, and older adults – require a variety of supports in terms of health, education, and social services. There is considerable variability in access to services across provinces, territories, and regions, as well as across the lifespan. Many play a key role in supporting autistic family members. Some experts and community members have advocated a national autism strategy as a way to provide a compelling shared vision for autism support; to improve the health and well-being of autistic children and adults; and to support the parents and caregivers of Autistic people. CAHS commissioned an Assessment on Autism to inform the development of this strategy.

Goal

CAHS required insights and recommendations from a broad group of Canadian stakeholders to shape recommendations for the Federal Government’s development of a National Autism Strategy.

Our Approach

To achieve this objective, Environics developed a robust research approach that integrated five phases of research:

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Pan-Canadian opinion surveys

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Rounds of web-based focus groups

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Online consultation through a platform called the Engagement Hub

Across all phases of research, participants included people with lived experience (i.e. Autistic people, caregivers, family members, service providers), and those with no connection to autism. The purpose of the quantitative surveys and focused groups was to understand the experiences, perceptions, and needs, associated with autism; and test responses to potential elements of a national autism strategy (e.g., policy directions, support structures). The online consultation, which was open to Autistic people and their family members as well as other supporters and the wider public, gathered further input. The Engagement Hub was a social media-style platform that allowed for structured engagement on the research topics. Designed to be accessible and engaging, the Hub allowed participants to respond to and build on each others’ perspectives, re-entering the platform multiple times when convenient for them – and renewing and deepening their participation as the conversation evolved. For this process, Environics developed research instruments with input and oversight from CAHS, as well as from a team of Autistic people and parents of Autistic people. These steps helped to ensure that all material was appropriate and approachable and would foster a safe and open environment for participants.​

Impact

Across all platforms, we engaged with more than 2,000 respondents over eight months. The final deliverable from Environics was a report incorporating findings from all research platforms, designed for inclusion as part of a wider autism assessment by CAHS. The information from the Environics report was integrated in a document created by CAHS for the Federal Government with key findings from CAHS. The stakeholder perspective provided essential context for the issues facing Autistic Canadians and their family members and helped to articulate strengths and challenges within existing Canadian health and support systems.

About the client

The Canadian Academy of Health Sciences brings together Canada’s top-ranked health and biomedical scientists and scholars to make a positive impact on the urgent health concerns of Canadians. These Fellows, drawn from all disciplines across our nation’s universities, healthcare, and research institutes, evaluate Canada’s most complex health challenges and recommend strategic, actionable solutions. The CAHS was fashioned after the National Academy of Medicine (formerly known as the Institute of Medicine) in the USA, to provide independent, objective, evidence-based analyses of health challenges that inform both public and private sectors in decision-making about policy, practice, and investment. CAHS has completed assessments on a number of key issues which are listed here.

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