Ethics & Equity: Harnessing the Power of Real-World User Data

The Child Mind Institute’s Yuki Kotani, MBA, recently sat down with Christa Studzinksi, PhD, director of business development and partnerships at the Ontario Brain Institute, to talk about equity and participatory research in digital therapeutics as part of our webinar series on Technology and Youth Mental Health. This initiative asks how tech can improve youth mental health outcomes — which includes gaining access to real world, or “ecological” data.

This wide-ranging conversation centers around the idea that inclusion and “authentic engagement” is transformative when researchers collaborate on study aims and design with participants. Dr. Studzinksi notes that many challenges to validating digital tools or interventions can be resolved by building a dialogue with end users who are “out in the community where people are living with and receiving care for their brain disorders.” This is particularly important when developing and testing tools with the potential for “creating alternate care pathways” and improving access in rural or under-resourced communities.

The Ontario Brain Institute has developed a one-pager on building authentic engagement and dialogue between researchers and participants; you can find it here.

This video is part of a series of discussions on the ethical and equity challenges to accessing and leveraging real world data in youth mental health research. View more videos on this topic:

• Amy Green, PhD, of Hopelab
• Stephen Scheuller, PhD, University of California, Irvine
• Casey Pick, JD, the Trevor Project

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