Since 2004

Protecting Americans from health data harms

We fight to keep your health information from being sold, shared, or used against you — through research, policy reform, and holding healthcare systems accountable.

Why privacy matters

Patient privacy is about far more than medical records — it's about protecting your ability to live freely and safely. When your health information gets out, it can affect your job, housing, education, and credit.

The Problem

Today's healthcare system makes you choose: get medical care or protect your privacy. Federal privacy laws have major gaps, and protections vary wildly from state to state.

The Gap

Once a hospital or insurer shares your health information, they don't have to tell you who received it, how it's being used, or what happens if something goes wrong.

Our Mission

We work to give you real control over your health information — and to make sure hospitals, insurers, and tech companies are transparent about how they use it.

22
Years of advocacy
50+
Coalition members
100+
Summit videos
30+
Privacy scenarios explained

Proven legislative impact

Together with 50+ organizations representing over 10 million Americans, we won landmark federal protections for your health data in 2009 — and we're still fighting.

See our legislative victories
Companies can't sell your health data without your permission
You can see who has accessed your records
Organizations must tell you when your data is breached
You have the right to get copies of your medical records
Sensitive records can be kept separate from your general file
Your health data must be encrypted to prevent theft

Your data. Your rights. Your health.

Your support helps us fight for stronger privacy laws, expose data misuse, and give patients the tools to protect themselves.