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The National Autism Spectrum-Disorders Surveillance (NASS) System in Canada: Design and Implementation
Across Canada, responding to Autism Spectrum Disorders (ASD) has become of increasing importance to health, education and social service sectors. In recognition of this need, the Public Health Agency of Canada (the Agency) has received a mandate to conduct nationwide surveillance of ASD to ascertain important descriptive and epidemiologically information by 2016. To this end, the Agency has been actively engaging with key stakeholders in this field to develop and implement a National Autism Spectrum-Disorders Surveillance (NASS) System in Canada.
Objectives:
The overall objective of the NASS is to coordinate efforts in filling critical public health knowledge gaps and contribute to advancing a strong evidence base to help improve the lives of those living with ASD in Canada. The NASS will be responsible for ongoing collection, integration, analysis, interpretation and dissemination of data for the reporting of ASD prevalence, characteristics, and related outcomes; both over time and across geographic regions. The specific objective of this presentation is to share and obtain feedback of the progress to date relating to the development and implementation of the NASS.
Methods:
To help guide the development and implementation of NASS, the Agency established the Autism Spectrum Disorders Advisory Committee to advise on the most effective approaches to capture data cross Canada. In addition, technical expertise was also sought from the Surveillance Working Group convened to support the operationalization of the process. Based on earlier work through environmental scans of existing data sources across the country, the NASS will use data sources from both the health and education sectors. To date, a public health surveillance case definition for ASD has been established along with the minimum, preferred, and enhanced data elements. Implementation will use a phased approach to provide participating jurisdictions flexibility through Collaborative Surveillance Agreements. The design of the NASS program has been structured into three areas: provincial/territorial implementation, national coordination, and applied analysis.
Results:
As part of the implementation phase, Letters of Invitationhave been sent to all 13 provinces and territories in Canada requesting their participation. These 13 jurisdictions are responsible for the delivery of public health care in Canada. The plan will clearly express program requirements such as the minimal data set, methods of data transfer, use of data for reports, criteria and methods for the approval process (developing the scope of what may be included, applicable partners, timing, and approximate budget), roles and responsibilities. A set of national indicators and data quality framework is also being created.
Conclusions:
A plan for the development of a national surveillance system of ASD for Canada has now been created. The plan is currently implemented with the goal of a first preliminary report to be generated by 2016. Feedback from experts is critical in the continued development of the NASS both within Canada and internationally.