Published: February 2008

Patient control of health data

Consumer Action joined the Coalition for Patient Privacy to support HR 5442, authored by Congressman Ed Markey, which would give Americans stronger rights to to protect their most sensitive information on earth, their health records.

Dear Representative Markey:

Patient Privacy Rights and many members of the Coalition for Patient Privacy commend your introduction of the Technologies for Restoring Users’ Security and Trust (TRUST) in Health Information Act of 2008 (HR 5442), and its strong provisions for health privacy.  This landmark legislation provides the important privacy protections that are essential to maintaining the bond of trust between patients and health care providers in a digital era.

Trust between healthcare provider and patient has been a cornerstone of American medicine. This bond of trust is one that extends beyond our nation’s boundary and even its history, dating all the way back to Hippocrates.  Sadly, this trust has been eroding since regulators decided to allow the acquisition of health data without requiring informed consent on the part of patients.  Now, it is all too easy for businesses, credit companies, insurers, employers and many other entities, legitimate and otherwise, to access a person’s health data.

Your bill puts patients back in control of their health data and incorporates the privacy protections and principles endorsed by the 50+ members of the bi-partisan Coalition for Patient Privacy including the American Civil Liberties Union, the American Association for People with Disabilities, American Conservative Union, the Family Research Council, Microsoft, Consumer Action, and Consumers for Health Care Choices.  Our coalition represents millions of Americans.

In particular, the inclusion of an individual right to health information privacy and security, and an opportunity to exercise that right is a critical step forward.  No health information technology (HIT) legislation should pass without affirmation that Americans should be able to protect their most sensitive information on earth, their health records.

The majority of patients who contact Patient Privacy Rights are concerned about discrimination by employers and insurers.  Your bill ensures that employers must receive informed consent from their employee before using or disclosing his or her personal health information. The TRUST Act also allows segregation of sensitive information and prohibits disclosure of personal health information to employees or agents responsible for making employment or personnel decisions without a separate authorization from the individual.  We are also pleased the bill does not pre-empt stronger state or Federal laws relating to a person’s access to health information.

We also support your consumer friendly requirements that marketers must get specific, informed consent in order to access patient information and that entities must notify each individual if a breach of security occurs.  All of these protections are simply common sense.     

While the TRUST Act promotes and protects patient privacy, at the same time, it ensures that health information can be quickly accessed with a warrant for national security purposes and that public health authorities will be able to inspect a patient’s health records in true medical emergencies.  Your legislation strikes a necessary balance between the needs of the medical community and the need of the individual to exercise control over her personal health information. HIPAA started to shift the balance in the opposite direction and creating an national electronic health information network (EHIN) without significant privacy protections would create an even greater discrepancy.
Common sense should dictate that strict privacy regulations be included upfront in any legislation that establishes a national EHIN.  Addressing privacy after the fact can only lead to delays in standards taking effect or worse, massive violations of privacy of the American public.  When our private health information is exposed we find ourselves in an incredibly vulnerable and quite frankly undemocratic state.  The TRUST Act takes a giant step forward in reassuring Americans’ trust and participation in all the progress HIT can offer.

We applaud your work on behalf Americans’ right to keep their private electronic health records just that - private.

Lead Organization

Coalition for Patient Privacy

Other Organizations

Alliance for Patient Safety | Citizens for Health | Consumer Action | Consumers for Healthcare Choices | Gun Owners of America | Just Health | The Mulitracial Activist | National Coalition for Mental Health Professionals & Consumers | The New Grady Coalition | Patient Privacy Rights | Private Citizen, Inc. | The Student Health Integrity Project (SHIP) | U.S. Bill of Rights Foundation | You Take Control, Inc.

More Information

The Library of Congress — Thomas — HR 5442

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