Autism Data Collaborative Engagement Event

Autism Alliance of Canada is a leading national coalition of more than 700 organizations and individuals working to inform autism policy at the provincial and national level. We have a specific mission to advocate for and contribute to the development of a National Autism Strategy in Canada that is being led by the Public Health Agency of Canada. We are committed to creating and supporting the implementation of autism policy that addresses critical gaps in funding and services currently preventing Autistic people and their families from exercising their full rights as Canadians. Autism Alliance of Canada is a recognized national leader and advocate in autism and disability policy, and we support and conduct health and social research that has real world clinical and policy implications.

Autism Alliance of Canada

The Autism Data Collaborative (ADC) is hosting an Engagement Event! Join us to learn & contribute to national research & policy initiatives!

What is the Autism Data Collaborative?The Autism Data Collaborative (ADC) was launched in 2021 with the goal of facilitating and accelerating multidisciplinary, multi-sector, and multi-jurisdictional data initiatives and health services and policy research for autism. So far, five different projects have formed based on knowledge sharing, dialogue, and collective expertise of the diverse ADC membership. The ADC members are made of people with lived experience, families and caregivers, clinicians, researchers, community leaders, policymakers, and trainees. For the past year, Autism Alliance of Canada has been at work putting together the resources to execute these important projects established for and with the autism community.For more information on the Autism Data Collaborative, please see <a href="https://www.autismalliance.ca/research-and-data/autism-data-collaborative/" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">this page</a> on our website. What is the purpose of this engagement event?Funded by the Canadian Institutes of Health Research, we are excited to hold this event to bring these projects back to our ADC members, share progress, and receive feedback! Supported by Autism Alliance of Canada’s inaugural cohort of Data-to-Policy Fellows, these projects are already taking big steps to advance autism research and data sharing across Canada. Please join us VIRTUALLY on June 19 to learn more and get involved in the following ADC initiatives:<ul><li>Leveraging Administrative Data to Inform Autism Policy (Data-to-Policy Fellow, Dr. Margherita Cameranesi)</li><li>Developing Shared Measurement Across Community Organizations (Data-to-Policy Fellow, Alisha Stubbs)</li><li>Strengthening Data Within Indigenous Communities (Data-to-Policy Fellow, Grant Bruno)</li><li>Creating a National Autism Lived Experience Advisory Group (Data-to-Policy Fellow, Dr. Amber Rieder)</li><li>The National Autism Waitlist Initiative (Data-to-Policy Fellow, Angela MacDonald-Prégent)</li></ul>During the ADC Engagement Event, you will have the opportunity to listen to updates on these initiatives. You’ll also have the opportunity to join a more in-depth small group session on any of the above projects and provide feedback.Our goal is to ensure the projects reflect the priorities of Autistic people, their families, and those that support them.What if I’m not a member of the ADC? Can I still attend?Yes! All who are part of the autism community are welcome to become a member of the ADC. Please <a href="https://forms.gle/itpk2bjd9xFtpat88" target="_blank" data-msys-clicktrack="0" rel="nofollow noopener noreferrer">register here</a> to join our network and receive our quarterly newsletter.This session is open to all within the autism community such as persons with lived experience, families and caregivers, clinicians, researchers, community organizations, data science experts and scientists, service providers, policymakers, trainees, and advocates.Note: Autism Alliance of Canada is committed to providing opportunities for groups who have historically been left out of the research ecosystem such as those marginalized by gender, race, sexual orientation, persons with disabilities, and Indigenous Persons status. In particular, we strive to increase capacity for the involvement of neurodiverse and Autistic people in research. We highly encourage you to attend if you identity with any or multiple of the above specified groups!W﻿e would like to acknowledge that this event is funded by a Canadian Institutes of Health Research grant.

Agenda

Welcome and Introduction

Our five Data-to-Policy Fellows will present an update on their projects, focusing on the topics of autism policy, measurement, reaching Indigenous communities, lived experience, and waitlists.

ADC Project Presentations  by Data-to-Policy Fellows

The Data-to-Policy Fellows will facilitate breakout room feedback sessions. Attendees will have the opportunity to chose which ADC initiatives they are interested in providing feedback to.

Project Feedback Session 

Drs. Singal and Rieder will announce the launch of an exciting new initiative spurring from the Autism Data Collaborative and discuss how you can stay involved in the future.

Next steps for the ADC and Closing Remarks

*Please note that this agenda is subject to change up to date of the event.

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Autism Data Collaborative Engagement Event

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Autism Data Collaborative Engagement Event

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