Exposed Online: The federal health privacy regulation and Internet user impacts
About the Pew Internet & American Life Project
The Pew Internet & American Life Project is a non-profit initiative fully funded by The Pew Charitable Trusts. The Project creates original research that explores the impact of the Internet on children, families, communities, health care, schools, the work place, and civic/political life. The Pew Internet & American Life Project aims to be an authoritative source for timely information on the Internet’s growth and societal impact, through research that strives to be impartial. For more information, please visit our Web site: http://www.pewinternet.org/.
About the Health Privacy Project
The Health Privacy Project is a part of the Institute for Health Care Research and Policy at Georgetown University. The Health Privacy Project is dedicated to raising public awareness of the importance of ensuring health privacy in order to improve health care access and quality, both on an individual and a community level. It is funded primarily by the Open Society Institute, the W.K. Kellogg Foundation, the California HealthCare Foundation, the Trellis Fund, the Pew Internet & American Life Project, the Robert Wood Johnson Foundation and the Deer Creek Foundation.
For additional background information on health privacy, please visit the Health Privacy Project’s Web site: http://www.healthprivacy.org. Among the resources available:
Virtually Exposed: Privacy and E-Health, Health Affairs, November/December 2000.
Health Privacy Principles for Protecting Victims of Domestic Violence, October 2000; produced by the Family Violence Prevention Fund.
Health Insurance Purchasing and Privacy Online for Individuals and Small Groups, June 2000; prepared for the California HealthCare Foundation.
Privacy: Report on the Privacy Policies and Practices of Health Web Sites, February 2000; prepared for the California HealthCare Foundation.
Exposed: A Health Privacy Primer for Consumers, December 1999; with support from the Open Society Institute’s Program on Medicine as a Profession.
Best Principles for Health Privacy, a report of the Health Privacy Working Group, July 1999; funded by the Robert Wood Johnson Foundation.
The State of Health Privacy: An Uneven Terrain, a practical, comprehensive guide to state health privacy laws, July 1999; funded by the Robert Wood Johnson Foundation.
Promoting Health/Protecting Privacy, a guide to health privacy with an emphasis on California law and practice, January 1999; funded by the California HealthCare Foundation.
This report is intended to give a general overview of how the federal health privacy regulation may or may not apply to health Web sites. It is provided with the understanding that the authors and publishers are not engaged in rendering legal or other professional services. Such services can only be conducted based on a complete understanding of specific factual circumstances. If legal advice or other expert assistance is required, the services of a competent professional should be sought. The authors, Georgetown University, the Institute for Health Care Research and Policy, and the Pew Internet & American Life Project specifically disclaim any personal liability, loss or risk incurred as a consequence of the use and the application, either directly or indirectly, of any information presented herein.
References to particular health Web sites are made to illustrate the potential application and shortcomings of the federal health privacy regulation in anticipation of the April 2003 compliance date. They are neither criticisms nor legal judgments of policies and practices of specific sites. The report refers to health Web sites as they existed during September 2001. Given the ever-changing nature of the Internet, it is possible that the organization or practices of these sites have changed since that time.