Coalition Letter to House Ways & Means re: Patient Privacy

Coalition for Patient Privacy

June 15, 2006

The Honorable William M. Thomas 
Committee on Ways and Means
Washington, D.C.

The Honorable Charles B. Rangel
Ranking Minority Member
Committee on Way and Means
Washington, D.C.

Dear Mr. Thomas and Mr. Rangel:

We, the undersigned organizations, urge you to support the Emanuel-Doggett Amendment to HR 4157 at the Ways and Means committee markup meeting on June 15, 2006. Our organizations represent constituencies from across the ideological and political spectrum, and we urge you to include basic principles of patient privacy in any HIT legislation.

Our coalition’s privacy principles are as follows:

  • Recognize that patients own their health data  
  • Give patients control over who can access their personally identifiable health information across electronic health information networks
  • Give patients the right to opt-in and opt-out of electronic systems
  • Give patients the right to segment sensitive information
  • Require audit trails of every disclosure of patient information and allow patients to review those disclosures
  • Require that patients be notified of suspected or actual privacy breaches 
  • Provide meaningful penalties and enforcement for privacy violations 
  • Deny employers access to employees’ medical records 
  • Preserve stronger privacy protections in state laws

The Emanuel-Doggett Amendment embodies the key privacy principles that our non-partisan Coalition for Patient Privacy has been urging Congress to add to health IT legislation.

Americans must trust the health IT system, before it will work. They must have confidence in the system.  They must have confidence that the personal information they share with healthcare providers will not be disclosed to others. Research informs us that unless patients are assured of privacy, they will avoid treatment and tests, they will lie about their symptoms and health issues, they will omit critical medical data, and they will delay care, endangering their health because they know their records will be used and shared without their permission.

There are countless stories of people being harmed and discriminated against when others know information about their healthcare treatments.  People have lost current or future jobs, been kicked out of college, denied insurance, denied credit, lost their identity, and harmed in immeasurable ways when the private information they told their healthcare providers became known to others who used the information for reasons that have nothing to do with healthcare or payment.

Who benefits when patients don’t have privacy? Not patients.

Please assure Americans that they can trust any health IT system by incorporating privacy principles into HIT legislation. We believe that building a national electronic health system without ironclad patient privacy rights is a prescription for disaster. 


African American Republican Leadership Council
American Association of People with Disabilities
American Association of Practicing Psychiatrists
Association of American Physicians and Surgeons
Bazelon Center for Mental Health Law
California Medical Association
Consumer Action
Foundation of Owner Operators Independent Drivers Association
Just Health
National Coalition of Mental Health Professionals and Consumers
National Center for Transgender Equality
National Health Law Program
Pain Relief Network
Patient Privacy Rights Foundation
Privacy Rights Clearinghouse
Privacy Rights Now Coalition
Republican Liberty Caucus
Texas Public Interest Research Group (TexPIRG)
The Multiracial Activist
Thoughtful House Center for Autism
U.S. Bill of Rights Foundation

Elected Officials:
State Senator Karen S. Johnson, Legislative District 18, Arizona (Republican)

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