A growing number of experts and lawmakers are sounding the alarm on how AI and your personal data are being used by the federal government—with little oversight and massive potential consequences. This post outlines what you can do.
FOR IMMEDIATE RELEASE The Light Collective, a patient advocacy group committed to protecting privacy and patient rights, today announced it has submitted a formal complaint to the Federal Trade Commission…
Your DNA isn’t just personal — it’s permanently identifying, impossible to change, and increasingly valuable to insurers, researchers, marketers, and law enforcement. As technology advances, your genetic and health data becomes more profitable to others and more predictive of your future — not just your ancestry, but your disease risk, reproductive potential, even your kids’ health. And yet, the protections around it remain fragile, fractured, and easy to sidestep.
Today is World Patient Safety Day, and The Light Collective is proud to share new community-based participatory research on patient priorities in health technology. Health data regulations today are fraught…
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.
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