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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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23andMe Goes Bankrupt: How Safe Is Your DNA?

By Privacy

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.

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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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Remembering Karl “KJ” Surkan

By Announcements3 Comments

It is with a heavy heart that we announce the unexpected passing of our dear friend KJ Surkan. KJ passed away peacefully in his sleep on Saturday, January 28th. Born February 6, 1969, KJ was a light in this world and was an integral part of our community. There are no words to express our deep sorrow but we are grateful to have known KJ.

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Why October Connects Breast Cancer Action with Cybersecurity Awareness

By For Everyone, For Group Admins & Moderators, For Group Members

It is both appropriate and regrettable that October is Breast Cancer Awareness Month and Cybersecurity Awareness Month. As breast cancer survivors, collaborators with online patient communities, and founders of an organization representing the rights and voices of patients in healthcare technology, we are committed to using technology to educate, support, and empower as many breast cancer patients as possible so they can have the knowledge and tools to beat cancer and live their best lives.

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SicGRL vulnerability is still not fixed

By For Group Admins & Moderators, For Group Members, For Health Care Providers5 Comments

There have been many new developments since we originally found this security flaw with Facebook’s group settings that impacted millions of people. SicGRL is no longer the only issue that the patient community has with Facebook. There have also been subsequent vulnerabilities discovered beyond SicGRL that impact the safety of Facebook users. This blog post is a high-level summary and update about what has changed since the FTC got involved—and, importantly, what has not changed.

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The Community Power Playbook

By For Everyone

Patients have been innovating for decades. HIV activists forced FDA action. The cystic fibrosis community moved Kalydeco from bench to bedside. People with breast cancer organized for access to Herceptin. Type 1 diabetes advocates normalized continuous glucose monitoring. Long COVID groups mapped symptoms and pushed for repurposed therapies. Different diseases, same playbook: build community‑run networks, get smart on the science, rewire trials and policy, and then use targeted leverage to change the rules — fast.

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PRESS RELEASE: Patient’s Organize for Their Digital Rights at World Patient Safety Day in DC

By Announcements, For Everyone, Press Release

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. 

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