Ethics Survey of Consumer Attitudes About Health Web Sites

New Survey Shows Internet Users Wary of Health Information Privacy; CHCF Says Industry-Wide Guidelines Necessary


Internet users are wary of the information they share online relating to their personal health information, says a survey commissioned by the California HealthCare Foundation (CHCF) and the Internet Healthcare Coalition (IHC). The recently completed survey sampled the opinions of more than 1,000 U.S. online adults. It shows the convergence of technology and health information has raised new privacy concerns that need to be addressed by the emerging ehealth industry. Cyber Dialogue conducted the in cooperation with the Institute for the Future. (The survey has a ±3 % variation.)

“This survey indicates that people still have serious concerns about their online privacy, especially as it relates to their personal health information,” says Mark D. Smith, M.D., M.B.A., president and CEO of the California HealthCare Foundation (CHCF). “The industry has the opportunity and responsibility to do the right thing to ensure that consumer fears are addressed with meaningful and comprehensive privacy policies and practices,” said Dr. Smith. “The industry can promote its own growth and success by creating consumer confidence and trust that the information provided will be safeguarded and not shared inappropriately with others,” Dr. Smith added.

According to the survey, 75% of those seeking health information on the Internet are concerned or “very concerned” about the sites, with which they’ve registered, sharing their personal health information without permission with a third party. For those who use the Internet, but who do not seek online health information, concern about privacy and security is the second most-often cited reason for not doing so, following the “lack of need” for health information.

Yet the survey shows that consumers are willing to share a range of personal information if the information is used to enhance the quality of their online experience and is not subject to unwarranted or undisclosed sharing or abuse.

The Internet has proved to be a tremendous resource for individuals’ simply gathering health information. But it also holds much promise in actually improving the delivery of health care through such applications as personal access to medical records, prescription drug refills, and more. However, the survey shows that the applications, which hold the most promise, are indeed the most controversial.

“Before the entire online community can truly utilize the full potential of the Internet for healthcare applications, consumer and content providers alike must come to a consensus on the ethical principles that will lease the industry forward,” says John Mack, president and co-founder of the Internet Healthcare Coalition. To that end, the IHC is holding an eHealth Ethics Summit in Washington, DC on February 1-2, 2000, to develop guidelines and best practices for the ethical conduct of ehealth Web sites.

The survey suggests that while concerns about privacy are significant, they don’t spell doom for those seeking to expand healthcare services on the Internet. The survey identified several factors that can increase consumer confidence relating to their online health privacy.

Consumer/user confidence is boosted if a site:

  1. Is recommended by user’s doctor.
  2. Has a published a privacy policy that states information will not be shared with advertisers, other sites or marketing partners.
  3. Gives user opportunity to see who has access to user’s profile.
  4. Allows user to make choices about use of information.

    The factors that have the biggest negative influence on users are if a site:

  5. Shares information with advertisers or marketing partners.
  6. Automatically collects information about user.
  7. Is sponsored by an insurance or pharmaceutical company.

    Despite the level of concern Internet users have about their medical privacy, 70 percent of survey respondents did not know whether there are laws protecting their medical information on the Internet, a fact mirrored by polls showing most people believe there is a Federal law that protects medical records. While 33 percent of Internet users think government should regulate health Web sites, another 30 percent believe the sites should be regulated, but are not sure by whom, while 20 percent believed the industry should be self-regulated.

    With these survey results, CHCF aims to continue their effort to inform the national debate on the importance of developing industry-wide standards to safeguard the privacy of personal health information. Last year, CHCF conducted the first independent national survey on consumer attitudes about the confidentiality of the medical records. The results of that survey can be viewed online (see link below).

    The Internet Healthcare Coalition is an international, non-partisan, non-profit organization dedicated to identifying and promoting quality healthcare resources on the Internet. The goal of the Coalition is to educate healthcare consumers and professionals about the evolving issues relating to the quality of Internet health resources and information.

    Cyber Dialogue is an Internet customer relationship management company that provides the tools, data, and services that enable senior marketing professionals to identify, segment, and target online consumers.

    Institute for the Future is a nonprofit research and consulting firm dedicated to understanding technological, environmental, and societal changes and their long-term consequences.


About the California Health Care Foundation

The California Health Care Foundation is dedicated to advancing meaningful, measurable improvements in the way the health care delivery system provides care to the people of California, particularly those with low incomes and those whose needs are not well served by the status quo. We work to ensure that people have access to the care they need, when they need it, at a price they can afford.