Talking Points


How to Talk to Your Elected Officials

Health Privacy Talking Points


My name is                                                  .  I am a/an      (occupation)     from     (city, state)     .


I am very concerned about my health privacy because (give your personal reasons for caring):




Our rights to health privacy are slipping away before our eyes.  I feel strongly that Congress needs to protect us and set national standards for health privacy. No health IT legislation should pass without enforceable basic health privacy rights for all consumers, rights which do not exist today.  Congress should ensure Americans have the right to control all personal health information

  • The HIPAA “Privacy Rule” as amended in 2003 took away everyone’s right to control who can see and use personal health information.
    • The form we sign at our doctor’s offices or for health care providers is not a “privacy notice” but actually a “disclosure notice”.  It allows our health records to be disclosed to multiple “covered entities” without our consent.
  • So-called “secondary uses” of our health information, which have nothing to do with improving our health, must be stopped.  We should control all uses of our personal health information.
  • We should be able to segment sensitive information and control who can access our personal health records.
  • Health information disclosed for one purpose should not be used for any other purpose until informed consent has been obtained.
  • Audit trails should be required by law of every disclosure of personal health information.
  • We should be notified promptly of suspected or actual privacy breaches.
  • Access to our personal health information should not be required to obtain employment, insurance, credit, or admission to schools, unless by statute.
  • Employers should not have access to our health records before informed consent has been obtained.
  • Need to preserve the far stronger privacy protections in state laws and medical ethics.
  • There should be no secret health databases.  Every data holder should ask our permission before collecting any personal health records.
  • Congress should set meaningful penalties and enforcement mechanisms for privacy violations.
  • Without trust, the health care system will fail, and people will cease seeking proper care due to fear and lack of privacy
  • No one should have to choose between privacy and health care.  We deserve both.


Ask:  Will you support the right for health privacy by voting for/against                                    ?

Please check Patient Privacy Rights Policy Page for bills you can ask your Elected Official vote for or against.

Remember to always thank the person for their time!

(Click here to download the Talking Points as a pdf.)