Coalition for Patient Privacy Letter to David Blumenthal

April 18, 2009



David Blumenthal, MD, MPP

National Coordinator
Office of National Coordinator for Health Information Technology
U. S. Department of Health and Human Services
200 Independence Avenue, SW
Washington, DC 20201


Dear Dr. Blumenthal:


As you begin to lead the nation toward broader adoption of health information technology (HIT) and greater protections for patients and consumers, the Coalition for Patient Privacy commends your commitment to public service and applauds your willingness to take on what many see as the greatest challenge facing America.  It is a phenomenal undertaking and we are confident that working together we can achieve both progress and privacy.


Our coalition represents a diverse, bi-partisan collection of organizations committed to patient privacy.  Prior to the passage of the American Recovery and Reinvestment Act (ARRA), we called upon Congress to “A.C.T.” to ensure Accountability for access to health records, Control of personal information, and Transparency to protect medical consumers from abuse; and we appeal to you to do the same.


It is vital that the public be adequately represented in the HIT and privacy policy making process.  We urge you to ensure that the public’s concerns, confusion, fears and interests are front and center before the HIT Policy Committee, as Congress clearly intended in ARRA.  If we fail to “really” hear the public and if we fail to hear patient advocates’ solutions, we will miss this golden opportunity for understanding and most importantly buy-in. 


We salute the individuals named to the HIT Policy Committee; they are all highly qualified individuals who will bring added value to the process. With this limited number of appointees, it is imperative for the Committee to reach out to many groups who are not represented but who have knowledge and expertise in consumers, privacy and HIT:  our Coalition looks forward to working with the Committee in helping shape this important policy. 


To that end, we request a meeting with you to begin sharing our concerns and possible solutions and to discuss the methods of optimizing the approach for an open, transparent process. 


We note the language creating the HIT Policy Committee requires it to “serve as a forum for broad stakeholder input” and it “shall ensure an opportunity for the participation …of outside advisors, including individuals with expertise in the development of policies for the electronic exchange and use of health information, including in the areas of health information privacy and security. . . ” We look forward to being part of this forum and learning more about the formal process for obtaining information from additional experts.


Tremendous progress has been made with the passage of additional consumer protections in the ARRA.  While there is much work ahead, our Coalition is committed to working closely with you and the HIT Policy Committee to ensure patients and consumers are represented and that we achieve progress by protecting privacy.  We look forward to meeting with you at the earliest possible time.






The Coalition for Patient Privacy


AIDS Action
Alliance for Patient Safety
Association of People with Disabilities

American Civil Liberties Union

American Psychoanalytic Association

Citizens for Health

Clinical Social Work Association

Confederation of Independent Psychoanalytic Societies
Consumer Action
Electronic Privacy Information Center
Government Accountability Project
Just Health
The Liberty Coalition
The Multiracial Activist
National Association of Social Workers
Patient Privacy Rights
Private Citizen, Inc.
U.S. Bill of Rights Foundation



Encl:    2009 Coalition for Patient Privacy Principles




The Honorable Kathleen Sebelius

Secretary – Designate, U.S. Department of Health and Human Services


Charles E. Johnson

Acting Secretary, U.S. Department of Health and Human Services


Nancy – Ann Min DeParle

Counselor to the President and Director of the White House Office of Health Reform


The Honorable Nancy Pelosi

Speaker, U.S. House of Representatives


The Honorable John Boehner
Minority Leader, U.S. House of Representatives


The Honorable Harry Reid
Majority Leader, U.S. Senate


The Honorable Mitch McConnell
Minority Leader, U.S. Senate


The Honorable Henry Waxman

Chairman, House Energy & Commerce Committee


The Honorable Charles B. Rangel

Chairman, House Energy & Commerce Committee


Robert Kolodner, MD

National Coordinator


For additional information please contact:


Ashley Katz

Executive Director

Patient Privacy Rights

(O) 512-732-0033

(C) 512-897-6390

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