A full-day interactive workshop held by York University highlighted the significance of the Privacy Project, an initiative designed to support young adults with developmental disabilities in matters of privacy and personal information rights.
These young adults have the same rights to the privacy of their personal information as everyone else, but they encounter many more barriers in exercising their rights. On their own, or with the support of a family member, it is important to respect their rights to information privacy and provide tools that will help them access legislation and stand on their rights more easily, said York University Professor Nazilla Khanlou, the Ontario Women’s Health council (OWHC) Chair in Women’s Mental Health Research.
Khanlou, who is also a professor in the Faculty of Health’s School of Nursing, said the Privacy Project was designed to research the state of factors that facilitate access or place barriers to young adults utilizing their rights to privacy information, but to also produce innovative knowledge translation tools for the community. The project was funded by the Office of the Privacy Commissioner of Canada (OPC) and was carried out by the Office of Women’s Health Research Chair in Mental Health at York University, and Community Living Ontario.
The full-day interactive workshop, held March 2, celebrated the Privacy Project with a gathering of family caregivers of youth with developmental disabilities, service providers, and researchers with the theme “Improving Privacy for Young Adults with Developmental Disabilities”.
The goal of the event was to provide input on the research presented, and participate in break-out groups where participants offered revisions to four knowledge products from the OPC Privacy Project aimed at supporting young adults with their privacy rights.
Following a welcome by Khanlou with Chris Beesley, CEO of Community Living Ontario, François Cadieux from OPC provided greetings. Michael Bach, founder and CEO of the Institute for Research and Development on Inclusion and Society, gave a keynote presentation that highlighted the importance of supporting autonomy and the right to decision-making through coordinated efforts.
Katie Degendorfer, a project team member with a degree in law, provided an overview of PIPEDA which is the relevant legislation in Canada protecting information privacy rights. Following that presentation, Anne Mantini summarized the project outcomes, including a scoping review of the literature and a view into the four Privacy Project products for the community: website, educational video, Service Provider toolkit and young adult’s decision-making tool.
The need for support and individualized accommodations to better support the diversity of decision-making ability, communication and contexts that can impact on young adults with developmental disabilities was also discussed.
Community Living Ontario has been an important partner to this project contributing to both the creation and review of the products, and the Privacy Project tools have been enriched by the participation of those who interacted in this workshop, said Khanlou.
She also said the initiative is a successful use of a creative interactive community engagement process and workshop to produce innovative knowledge translation products for a vulnerable population.
The Privacy Project reaffirms York’s commitment to human rights and takes a step forward in reinforcing the role of knowledge translation in the community.