November 19, 2001

Exposed Online: The federal health privacy regulation and Internet user impacts

The Terrain

Introduction

Health care providers maintain and share a vast amount of sensitive patient information for a variety of reasons.  Such records are kept and shared for diagnosis and treatment of the patient, payment of health care services rendered, public health reporting, research, and even for marketing and use by the media.  Until recently, most of that information was in paper records. 

While a paper-based system has vulnerabilities, it also places some natural limits on the ability of information collectors to share and disseminate information.  It is sometimes a challenge to locate paper records, and in order to disseminate the information someone must physically remove it from the premises – either by carrying, mailing or faxing it.  These limitations constitute a double-edged sword.  They offer some protection from improper dissemination of health information, but also may obstruct the flow of the information when it is being shared for legitimate, health care-related purposes.

The difficulties and expense of transmitting health information in a paper-based system have motivated the health care industry to migrate toward electronic collection, storage and transmission of information, such as via the Internet.  Health data can be easily located, collated and organized.  With the click of a mouse, sensitive and personal information can be sent to any number of places thousands of miles away.

The new information technologies benefit not only the traditional bricks and mortar health care entities but also consumers.  A health care provider’s ability to access quickly a patient’s entire medical record, assembled from various sources, can facilitate diagnosis and eliminate medical errors, such as prescribing incompatible medications.  In fact, electronic health information on the Internet can be easily accessible to many different people, including the patient herself.  The electronic medium also facilitates communication between consumers and health care businesses.  A wide range of health care activities and services, from general health information to online support groups and personal health management tools, are offered online.  Consumers can “surf” the Web for information about symptoms, remedies and health insurance rates.  They can obtain health care services, such as second opinions and medical consultations, and products, such as prescription drugs, online.2 They also can interact with doctors and other users in chat rooms and by e-mail.

Since HIPAA’s passage in 1996, there has been an explosion of health-related activity on the Internet. There are thousands of health-related Web sites,3 and they are proving popular.4 In the past two years, it is estimated that the number of people accessing health information online has doubled.  As of September 2001, an estimated 61% of Internet users or sixty-five million people in the United States have gone online in search of health information.5

However, while the Internet offers unique advantages to both patients and the health care industry, some consumers are afraid to take advantage of the benefits because of privacy and confidentiality concerns.  More than 75% of people are concerned about Web sites sharing information without their permission and this impacts their willingness to use the Internet for health-related activities.6

  1. See, e.g., David Schwab, “Merck sells $1B Worth of drug online,” The Star-Ledger, Oct. 16, 2001 (Merck-Medco, which manages prescriptions for sixty-five million Americans sold $1 billion worth of prescription drugs since its Internet pharmacy started three years ago. It expects to sell $750 million worth of prescription drugs online this year).
  2. T.R. Eng, The eHealth Landscape: A Terrain Map of Emerging Information and Communication Technologies in Health and Health Care, The Robert Wood Johnson Foundation (2001).
  3. A few are ranked in the top 500 most visited Web sites by Media Metrix, a service provided by Jupiter Media Metrix, which measures user activity and site traffic. Jupiter Media Metrix also compiles a top 10 health Web sites list.
  4. Pew Internet & American Life Project survey (August-September 2001).
  5. Ethics Survey of Consumer Attitudes about Health Web Sites, conducted by Cyber Dialogue and the Institute for the Future for the California HealthCare Foundation and the Internet Healthcare Coalition (January 2000).