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…
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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.
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.
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.
In April 2024, the FTC (Federal Trade Commission) made important updates to a rule designed to protect people’s health information, especially when it’s managed by health apps and wearable devices that aren’t covered by traditional health privacy laws like HIPAA.
Check out this resource from GoInvo which visually describes how your health data are used by different entities. When we as patients lack access to our own complete medical records, one thing to consider is how many others had such easy access to our data.