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.
