|May 24, 2006
The Honorable Nancy L. Johnson, Chair, House W&M Health Subcommittee and
Dear Mr. Deal and Mrs. Johnson:
The undersigned organizations urge you to include iron-clad patient privacy language in all legislation dealing with health information technology.
We realize there is strong pressure to pass HIT legislation this session, but all efforts to date disregard the importance of patient privacy. If health information technology legislation is not affirmatively grounded in medical ethics, common and Constitutional law, and the physician-patient privilege, patients will be forced to have their medical records used and disclosed against their will. Patients will neither willingly use nor trust electronic systems for storing and sharing their sensitive medical records if they do not control access to their medical records.
Some believe an acceptable first step would be to pass legislation that avoids language relating to patient privacy, under the flawed assumption that “neutrality” regarding patient privacy does no harm. On the contrary: not affirming patient privacy rights in HIT legislation is a prescription for disaster. Maintaining the status quo equals zero patient privacy. Omission of patient privacy language insures the permanent loss of privacy and control over who can see and use patient records by: (a) codifying AHIC or ONCHIT which allows non-elected appointees to set national standards for medical privacy over electronic networks, and (b) continuing the existing practice of denying Americans the right of consent. Records will flow to millions of private corporations, employers, individuals, and government agencies, resulting in irreparable harm to every American.
We ask that you take the position that doctors swear to uphold: first, do no harm. We the undersigned ask that you:
The following privacy principles must be included in any HIT legislation language:
We, the undersigned, believe that avoiding a full, open, national debate on the merits of building an electronic health network by either placing a bill on the Suspension calendar or incorporating language into an unrelated bill is not in the interest of patient privacy.
We believe that patient ownership and control of their medical records is in the best interest of our nation, our health, our safety, and the welfare of our communities.
African American Republican Leadership Council
cc: Energy & Commerce Committee