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Patient Advocacy Leaders

Cyber Hygiene: It’s Time To Give Your Online Self A Shower

By For Everyone, Patient Advocacy Leaders, Privacy

Protecting your privacy online can feel overwhelming.  But we can help.As you browse online for health conditions or advice—looking up symptoms, medications, or clinics—ad trackers can quietly broadcast clues about what you’re reading and where you are billions of times a day across the web. Data brokers turn those clues into “audience lists” of people likely dealing with things like asthma, depression, or diabetes (sometimes even tagging caregivers or people in government/medical roles), even when platforms say they ban this. And once your data is pushed into that system, there’s no practical way to control who sees it, how it’s combined with other data, or who it’s sold to next.

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Caught In The Middle Without A Safety Net

By For Everyone, For Health Care Providers, Patient Advocacy Leaders, Patient AI Rights Initiative

When health systems and policymakers think about designing AI for the clinic—slow, controlled, locked inside compliance and limited scope of a clinical encounter. Technology companies like Meta, Google, and Microsoft, on the other hand, thinks about “users”—scaling fast, collecting data first, and asking forgiveness never. And right in that no-man’s land sit patients, who are using AI every day without rights, safety nets, or protections. They’re treated as neither full citizens of the clinic nor valued customers of tech—just data streams to be mined. That gap is where harm festers, safety issues linger, where trust collapses, and where the most vulnerable are left to carry the risk alone.

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Healthcare Cybersecurity: Tackling Threats at Cybermed Summit 2024

By For Everyone, For Health Care Providers, Patient Advocacy Leaders

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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Cybermed Summit: June 13th in Washington DC

By For Everyone, For Health Care Providers, Patient Advocacy Leaders

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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The new FTC Data Breach Notification Final Rule is a win for Consumers/Patients and Privacy

By For Everyone, For Health Care Providers, Patient Advocacy Leaders, Public Comment

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.

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