New Tool for your Personal Health Records (PHRs): Check out our PHR Privacy Report Card to see how some popular PHRs treat your health information privacy.

October 23, 2009 - The Coalition for Patient Privacy sent comments to Health and Human Services on the inadequate Breach Notification rule.  Read our comments here.

And we were not the only ones "dismayed and disappointed." Members of the House of Representatives sent a letter to HHS earlier this month urging them to "revise or repeal" the new breach notice rules that eliminate consumer protections intended by Congress!  View their letter here.

AHRQ Report: Consumer Engagement in Developing Electronic Health Information Systems Summary: Patients want control. CBS News: Want A Job In Akron? Hand Over Your DNA

Our Mission

PPR is the nation’s health privacy watchdog, a 501(c)3 nonprofit organization.   

Our mission is to ensure the right to control your medical privacy,
to protect your jobs and opportunities.   

When it comes to your medical history, mental health, medications and DNA, you should have the right to control who is in your “circle of trust”.  As our records go online, this control is more important than ever before.

• If a school or university learns your child has ADHD or is being treated for depression, they may deny admission.
• If a boss knows you take Xanax or Zoloft, they may reconsider your promotion.
• If you or your spouse have a serious or costly chronic illness, an employer may not hire you or your children.  A bank may deny a loan or credit.
• If you get a genetic test, most researchers and companies claim to own your DNA.  Hospitals freely use the DNA of all newborns.  If you carry the breast cancer gene, you, your children and grandchildren may always be stigmatized, even if they aren’t sick. 

When you sign the HIPAA form in doctors’ offices, you are only affirming you received notice that they can do whatever they want with your records.

Patient Privacy Rights (PPR) works to empower individuals and prevent widespread discrimination based on health information using a grassroots, community organizing approach.  We educate consumers, champion smart policies and expose and hold industry and the government accountable.

Our Vision

Patient Privacy Rights’ vision is to be the premier guardian and advocate for health privacy rights. 

• We envision a nation of educated consumers who can advocate successfully for their right to health privacy. 
• We envision a strong national policy recognizing our right to health privacy with safeguards to ensure and protect that right in federal statute. 
• We envision a successful, progressive health information technology industry that ensures that consumer control of personal health information is the cornerstone of product design.

What Can You Do?