Coalition Letter to HHS/HIT re: Health Information Privacy

Coalition for Patient Privacy 

November 24, 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

See Letter as .PDF
See Letter as .DOC

Dear Dr. Blumenthal:

We were very pleased to hear your announcement last month regarding a new privacy and security work group that will advise the HIT Policy Committee and “create recommendations based on results of the September privacy hearing.” Our Coalition and the millions of Americans we represent solidly stand behind the remarks Dr. Latanya Sweeney and Dr. Deborah Peel made at the September privacy hearing. Americans clearly want to control their personal health information and, more importantly, they expect the federal government to ensure this happens.

We have been provided no evidence that control or meaningful, informed consent does not work. In fact, the final report from the Agency for Healthcare Research and Quality that describes their recent nationwide focus groups clearly illustrates that the public expects the right to decide who can see and use their personal health information. AHRQ determined there was no support for the establishment of general rules that apply to all health care consumers. Participants thought that health care consumers should be able to exert control over their own health information individually, rather than collectively[1]. The Administration has a duty to respect and to protect these fundamental privacy rights.

From the outside looking in, we note the HIT Policy Committee has an extensive and difficult job description and seemingly unrealistic time constraints. It is critical that individual experts outside this Committee be an integral part of the privacy and security work group, as Congress intended in HITECH. The work simply cannot be done without reaching out to other experts in health privacy and national consumer privacy advocacy organizations.

Therefore, we urge you to cast a broad net when selecting members of this critical work group. Many privacy and consumer experts that have a wealth of knowledge on HIT and privacy are eager to serve this endeavor. We hope you will call on members of our Coalition, including Dr. Peel, along with HIT vendors implementing innovative privacy solutions.

We support your efforts and continue to offer our expertise and time.


The Coalition for Patient Privacy

American Association of People with Disabilities
American Civil Liberties Union
American Council for the Blind
Clinical Social Work Association
Consumer Action
Electronic Privacy Information Center
Just Health
The Multiracial Activist
National Association of Social Workers
National Coalition of Mental Health Professionals and Consumers
Patient Privacy Rights
Private Citizen, Inc.
Secure ID Coalition 
U.S. Bill of Rights Foundation
Universata, Inc.


HIT Policy Committee Members
HIT Standards Committee Members

For additional information, please contact:

Ashley Katz
Executive Director
Patient Privacy Rights
(O) 512-732-0033
(C) 512-897-6390
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1AHRQ Publication No. 09-0081-EF "Final Report: Consumer Engagement in Developing Electronic Health Information Systems" Prepared by: Westat, (July 2009), see page 29, (last visited September 14, 2009)

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