Now is the time for the patient perspective to be truly seen rather than tokenized, and understood rather than simply heard. We hope to cultivate a future where current and future patients have the rights and resources to gain autonomy over their own data, supported by a heightened public awareness, government policy, and adjusted corporate practices. There can be no aggregation of our data without representation of the patient voice.
Are you at a hospital that can’t help patients? Here is the short term fix.
We lost our friend, colleague, and bright light in the breast cancer community Marlena Murphy. To know and work with Marlena was to love her. In 2018, at the young…
In a nutshell, the ruling that hospitals can share patient browsing data to Meta, TikTok and other third parties via adtech if patients view health related content, voiding part of OCR’s ban on tracking technologies.
This year recognized an unmet need to bring patient community representation to shape the governance of AI Policy, through our diverse and growing coalition of patient advocacy organizations and leaders. To address…
This year’s summit will feature discussions led by healthcare providers, cybersecurity researchers, public health policymakers, representatives of rural healthcare, and more. The event will focus on improving long-term resilience and sustainability of the public health sector, examining effectiveness and efficiency of so-called “best efforts” to date. Using real world examples, we will help to build a better framework for improving healthcare cybersecurity, drawing on public policy, operational experience, and economics.
This year’s summit will feature discussions led by healthcare providers, cybersecurity researchers, public health policymakers, representatives of rural healthcare, and more. The event will focus on improving long-term resilience and sustainability of the public health sector, examining effectiveness and efficiency of so-called “best efforts” to date. Using real world examples, we will help to build a better framework for improving healthcare cybersecurity, drawing on public policy, operational experience, and economics.
Health AI Partnership: Patient Community Wisdom From Past Waves of Technology Innovation to Build The Future of AIHealth AI Partnership
This webinar features the latest updates from The Light Collective. Tommy Wang, PhD, will moderate a panel of speakers, including Andrea Downing and Valencia Robinson from The Light Collective, Ysabel Duron from the Latino Cancer Institute, and Liz Salmi from OpenNotes.
On April 26, 2024, the Federal Trade Commission (FTC) issued its finalized changes to the Health Breach Notification Rule. Some may remember the prior history of the FTC failing to provide protections for health groups back in 2019. At the time patients raised an FTC Complaint about the privacy of ‘Closed’ groups, yet the complaint went unheeded. It is a notable to see after five years the tides are turning toward stronger consumer protection and health privacy.
© 2026 Light Collective.
