Skip to main content

New, free course on capturing the value of V1C for healthcare!

Join FDA and DiMe during a 2-day virtual event.

The deadly state of surveillance capitalism


March 16, 2023


Andrea Downing

Co-Founder at The Light Collective


Jennifer Goldsack

CEO at Digital Medicine Society (DiMe)

Discussion Topic

In this historical moment the gap between legislation that does not yet exist and institutional practices that are not yet regulated leaves people without the essential protections they need to maintain their privacy and their basic rights. This leaves online patient communities vulnerable to privacy violations, identify theft, scams, discrimination, disinformation, ad targeting, harassment and other forms of exploitation that can steal their security and undermine their health, wealth and overall well-being of patient populations.

This panel explored how The Light Collective, a network of tech savvy patient communities, came together to address this problem. Their founder, Andrea Downing, discussed their published research on Meta Pixel and cross-site tracking that sparked congressional investigations, and drove HHS guidance.

Watch the recording

View the slides

Join our next project

Help streamline the path to regulatory and commercial success to optimize health outcomes for the greatest number of patients

Join the Integrated Evidence Plans project

Join us
Not today