Bipartisan Coalition Sends Letter to Congress Urging Privacy Protections with Health IT

Privacy safeguards are needed if funds are to be provided for
implementation of health IT systems in economic stimulus package

January 14, 2009

Contact: Ashley Katz, Patient Privacy Rights, (512) 897-6390, akatz@localhost:8888/pprold; or
Matthew Allee, American Civil Liberties Union, (202) 675-2336,

WASHINGTON — At today’s news conference, the Coalition for Patient Privacy is releasing a letter sent to Congress advocating for the inclusion of privacy safeguards with any funding given to implement health IT systems in the proposed economic stimulus package. In the letter, the bipartisan coalition, representing over 30 organizations, individual experts and the Microsoft Corporation, welcomes the renewed commitment in Congress to protecting consumers over special interests, but makes clear that trust is essential to health IT adoption and participation, and only attainable with privacy protections.

The coalition is calling on Congress to “A.C.T.”, by providing: accountability for access to health records, control of personal information, and transparency to protect medical consumers from abuse. Consumer trust is essential to health IT adoption and participation, and only attainable with privacy safeguards. Through these three tenets, implementation of health IT is not only attainable, but would protect the right to privacy for consumers, employees, and providers.

Below are statements from the organizations participating in today’s news conference:

American Civil Liberties Union:

“Only with proper privacy safeguards in place will the American people get behind the shift to health IT systems,” said Timothy Sparapani, ACLU Senior Legislative Counsel. “If Congress is planning to spur the integration of health IT, members must remember the needs of their constituents and include protections for medical privacy. Privacy enables health IT it does not prevent it because privacy protections ensure the public will participate and utilize health IT.”

Consumer Action:

“Privacy is not just a basic right for all Americans, it has become a basic necessity,” said Michelle De Mooy, National Priorities Associate of Consumer Action. “Real people are already suffering the ill effects of losing their medical privacy, including losing jobs and being victims of identity theft. Privacy protections must be at the core of Health IT to prevent this from continuing to happen.”

National Association of Social Workers:

“Social workers know from practice experience that consumers will not divulge critical and highly personal health information to health professionals unless they are assured their information will be kept private by their treating clinician,” said James Finley, NASW Senior Associate. “Repercussions from the release of personal health information can have critical ramifications with family members, employers and insurance plans.”

Patient Privacy Rights:

“Privacy makes health IT successful,” said Ashley Katz, Executive Director of Patient Privacy Rights. “The Coalition is asking for accountability, control and transparency, very basic, common sense protections. We all want to innovate and improve health care. But without privacy, our system will crash as any system with a persistent and chronic virus will. Americans will avoid participation or worse, avoid care altogether and undoubtedly misrepresent the truth about their medical history.”

“Americans concerns are not without cause; our medical records have become one of the hottest commodities on the market, putting our jobs, reputations and opportunities at risk. We encourage Congress to move forward with the progress already made in the House committees to protect privacy and promote health IT.”

To see a copy of the letter, click here.