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Suggested Citation:"Front Matter." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
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EFFECT OF THE HIPPA PRIVACY RULE ON HEALTH RESEARCH

Proceedings of a Workshop Presented to the National Cancer Policy Forum

National Cancer Policy Forum

Roger Herdman and Harold Moses, Rapporteurs

INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C
www.nap.edu

Suggested Citation:"Front Matter." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
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THE NATIONAL ACADEMIES PRESS

500 Fifth Street, N.W. Washington, DC 20001

NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine.

This study was supported by Contracts No. HHSN261200611002C, 200-2005-13434, TO #1, HHSM-500-2005-00179P, HHSP23320042509XI, TO #4, 223-01-2460, TO #27, HHSH25056133, TO #6 between the National Academy of Sciences and, respectively, the National Cancer Institute, the Centers for Disease Control and Prevention, the Centers for Medicare and Medicaid Services, the Agency for Healthcare Research and Quality, the Food and Drug Administration, and the Health Resources and Services Administration. Support was also received from the American Cancer Society, the American Society of Clinical Oncology, C-Change, and UnitedHealth Group. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies that provided support for this project.

International Standard Book Number 0-309-10291-X

Additional copies of this report are available fromt the

National Academies Press,

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For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu.

Copyright 2006 by the National Academy of Sciences. All rights reserved.

Printed in the United States of America.

The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.

Suggested Citation:"Front Matter." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
×

“Knowing is not enough; we must apply.

Willing is not enough; we must do.”

—Goethe

INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES

Advising the Nation. Improving Health.

Suggested Citation:"Front Matter." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
×

THE NATIONAL ACADEMIES

Advisers to the Nation on Science, Engineering, and Medicine


The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences.


The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Wm. A. Wulf is president of the National Academy of Engineering.


The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine.


The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council.

www.national-academies.org

Suggested Citation:"Front Matter." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
×

NATIONAL CANCER POLICY FORUM

HAROLD L. MOSES (Chair), Professor of Cancer Biology, Medicine, and Pathology, Director Emeritus,

Vanderbilt-Ingram Comprehensive Cancer Center, Vanderbilt University Medical Center

PETER BACH, Senior Advisor,

Office of the Administrator, Centers for Medicare & Medicaid Services

EDWARD BENZ, President,

Dana-Farber Cancer Institute

THOMAS BURISH, Chair,

ACS Board and Provost, Notre Dame University

MARK CLANTON, Deputy Director,

Cancer Delivery Systems, National Cancer Institute

BETTY FERRELL, Research Scientist,

City of Hope National Medical Center

JOSEPH FRAUMENI, Director,

Division of Cancer Epidemiology and Genetics, National Cancer Institute

STEPHEN FRIEND, Executive Vice President,

Oncology, Merck

PATRICIA GANZ, ASCO Board Member and Professor of Medicine,

University of California at Los Angeles

THOMAS KEAN, Executive Director,

C-Change

WILLIAM LAWRENCE, Director,

Center for Outcomes and Evidence, Agency for Healthcare Research and Quality

LYNN MATRISIAN, Chair,

Division of Cancer Biology, Vanderbilt University

WILLIAM McGUIRE, Chairman and CEO,

UnitedHealth Group

DAVID PARKINSON, Senior Vice President,

Oncology Research and Development, Biogen IDEC

EDITH PEREZ, Director,

Cancer Clinical Study Unit, Mayo Clinic

SCOTT RAMSEY, Member,

Fred Hutchinson Cancer Research Center

EDDIE REED, Director,

Division of Cancer Prevention and Control, Centers for Disease Control and Prevention

WILLIAM ROBINSON, Director,

Office of Minority Health and Health Disparities, Health Resources and Services Administration

CHARLES SAWYERS, Professor of Hematology/Oncology, Division of

Hematology-Oncology, University of California at Los Angeles

MARGARET SPITZ, Chair of Epidemiology, M. D.

Anderson Cancer Center

Suggested Citation:"Front Matter." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
×

ELLEN STOVALL, President and CEO,

National Coalition for Cancer Survivorship

JANET WOODCOCK, Deputy Commissioner for Operations, Food and Drug Administration

Staff

SHARYL NASS, Senior Program Officer

ROGER HERDMAN, Director, National Cancer Policy Forum

ALIZA NORWOOD, Research Assistant

MARY ANN PRYOR, Senior Program Assistant

Suggested Citation:"Front Matter." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
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Suggested Citation:"Front Matter." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
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Suggested Citation:"Front Matter." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
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Suggested Citation:"Front Matter." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
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Suggested Citation:"Front Matter." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
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Suggested Citation:"Front Matter." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
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Suggested Citation:"Front Matter." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
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Suggested Citation:"Front Matter." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
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Suggested Citation:"Front Matter." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
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Page viii Cite
Suggested Citation:"Front Matter." Institute of Medicine. 2006. Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum. Washington, DC: The National Academies Press. doi: 10.17226/11749.
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The Health Insurance Portability and Accountability Act (HIPAA) of 1996 was enacted to improve the portability and continuity of health insurance; promote medical savings accounts; improve access to long-term care services and coverage; and simplify the administration of health insurance. HIPAA's Administrative Simplification provisions focus on facilitating the electronic exchange of information for financial and administrative functions related to patient care. However, the very advances that make it easier to transmit information also present challenges to preserving the confidentiality of potentially sensitive personal information contained in medical records. In 2003, the President's Cancer Panel discovered HIPAA Privacy Rule slowed research on cancer survivors, as well as causing increased bureaucracy, informed consent problems, and complications for clinical trials. Effect of the HIPAA Privacy Rule on Health Research evaluates the impact of HIPAA provisions and provides guidance to legislators on amendments needed to make this law better serve the interests of cancer survivors and others.

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