2007 / 2008 Coalition

The Coalition for Patient Privacy is a bipartisan network of state and national organizations and health IT corporations working to restore our right to control access to our sensitive health records.

We are working together to educate Congress about the need for health privacy for all Americans and to build an electronic healthcare system where patients can keep their health records private.

Please email us or contact us at 512-732-0033 if your organization
wants to support the principles below and join the Coalition.

COALITION URGES PRIVACY IN E-PRESCRIBING: MAY 2008

The Coalition for Patient Privacy is urging Congress to include privacy protections in any federal electronic prescribing legislation. Read the Coalition’s letter to Congress here and their press release here.

What is scary about e-prescribing? Much more than you might think. Today, plenty of private corporations and employers have access to Americans’ private prescription use that includes individually identifiable data. While e-prescribing is attractive to many, Americans do not want their private prescription information data mined and used without their permission. Many Americans would be quite alarmed to discover their employer and others know they take an anti-anxiety medication or that they are being treated for an STD.

Click here to see the Coalition’s recommended principles for e-prescribing legislation. You can read about current e-prescribing legislation at our Legislation page.

PRIMARY LETTER TO CONGRESS ON PRIVACY AND HEALTH IT

In October 2007, nearly 50 organizations joined the Coalition for Patient Privacy to announce and deliver our 2007 Letter to Congress demanding that consumers control their personal health records. The letter includes the Coalition’s updated the Privacy Principles. At the October 18, 2007 press conference Rep. Ed Markey (D-MA) joined Coalition members representing Patient Privacy Rights, the ACLU, the U.S. Bill of Rights Foundation and Microsoft Corporation, Inc. in calling for legislation to restore our right to health privacy. Read the 10/18/07 press release.

In 2006, the Coalition authored three letters to Congress and several joint press releases.

2007 Patient Privacy Principles (view as a downloadable pdf)

The Coalition for Patient Privacy developed the following privacy principles to serve as standards for legislation in Congress. Without these ironclad privacy protections, consumers will not trust or participate in any electronic health system.

  • Recognize that patients have the right to medical privacy*
    • Recognize that user interfaces must be accessible so that health consumers with disabilities can individually manage their health records to ensure their medical privacy.
  • The right to medical privacy applies to all health information regardless of the source, the form it is in, or who handles it
  • Give patients the right to opt-in and opt-out of electronic systems
    • Give patients the right to segment sensitive information
    • Give patients control over who can access their electronic health records
  • Health information disclosed for one purpose may not be used for another purpose before informed consent has been obtained
  • Require audit trails of every disclosure of patient information
  • Require that patients be notified promptly of suspected or actual privacy breaches
  • Ensure that consumers can not be compelled to share health information to obtain employment, insurance, credit, or admission to schools, unless required by statute
  • Deny employers access to employees’ medical records before informed consent has been obtained
  • Preserve stronger privacy protections in state laws
  • No secret health databases. Consumers need a clean slate. Require all existing holders of health information to disclose if they hold a patient’s health information
  • Provide meaningful penalties and enforcement mechanisms for privacy violations detected by patients, advocates, and government regulators

Definition: *Health information privacy is an individual’s right to control the acquisition, uses, or disclosures of his or her identifiable health data. (Report of the NCVHS to Sec Leavitt dated June 22, 2006)

2007-08 Coalition Members

Click here for the 2006 Coalition

  • American Association of Practicing Psychiatrists
  • Professionals and Consumers
  • Bob Barr (former Congressman R-GA)
  • Children’s Birthright Trust
  • The New Grady Coalition
  • Citizens Outreach Project
  • The Cyber Privacy Project
  • Greg Scandlen, Health Advocate
  • Doctors for Open Government
  • The Student Health Integrity Project (SHIP)
  • Ethics in Government Group
  • Tradition, Family, Property, Inc.
  • Georgians for Open Government