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For Everyone

Public Comment Alert: ASTP/ONC Deregulatory Actions to Unleash Prosperity

By Announcements

Most of us assume that when our health info moves between a doctor’s office, a hospital, a pharmacy, or an app, there are basic safety checks in place—like “you can’t log in without strong protection,” “your data is encrypted,” and “there’s a record of who accessed it.” Those basics matter because when health data leaks or gets misused, the harm isn’t abstract. It can mean an abuser finds you, an employer learns something they shouldn’t, your insurance situation gets complicated, or you lose trust in care and stop seeking it.

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February 27, 2026
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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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October 15, 2025
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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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September 5, 2025
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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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August 8, 2025
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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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September 10, 2024
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