ONLINE PRIVACY: Survey Reveals Concern Over Health Information Privacy

      Three-quarters of Internet users seeking health knowledge on the Web are "concerned" or "very concerned" that personal health information they provide will be released without their consent to a third party, according to a new survey of 1,000 online adults. Released yesterday by the California HealthCare Foundation and the Internet Healthcare Coalition, the report, titled "Ethic Survey of Consumer Attitudes About Health Web Sites," reveals privacy concerns sparked by the "convergence of technology and health information" into a new e-health industry. Among those who do not consult the Web for health information, privacy and security concerns rank second only to "lack of need" as the primary reason (CHCF release, 1/27). Respondents were most concerned about sites sharing their profile with advertisers or marketers, with 88% indicating they would not submit information if this were the case. They also were somewhat adverse to a variety of potential medical services the Internet could provide. Only 42% of Internet users would allow doctors to have access to their personal medical records online, while only 38% would want online availability of medical records for themselves. In both cases, 40% of respondents said they would not use the application due to privacy concerns. The report notes, "In short, the very aspects of Internet-driven health care that hold the most promise for improving care delivery are the same aspects that raise the most concern among the public" (Ethics Survey, 1/27). But according to the CHCF, these doubts do not necessarily "spell doom" for the future expansion of online health care services. Consumer confidence in Internet health sites increases when a doctor recommends the site and when the site has a published privacy policy barring the sharing of information. Mark Smith, CHCF president and CEO, explained, "The [e-health] 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" (CHCF release, 1/27). He is urging the industry to create and follow strict privacy guidelines before the government is forced to intervene. "If I were the industry, which I am not, I would say that the clock is ticking," Smith said (McGuire, Newsbytes, 1/27).

Government Action on the Horizon
      If some members of Congress have anything to say about it, that point of intervention will come sooner than later. Sen. Robert Toricelli (D-N.J.) is gathering support for a "far-reaching" Internet privacy bill he plans to unveil later this year, TechnologyDaily/P.M. reports. A letter from Toricelli to his colleagues says that the measure would make companies responsible for protecting consumers' personal information and would require them to obtain consent before releasing that information to outside parties. Under the law, Web sites also would have to disclose explicitly how they will use "personally identifiable information" and notify visitors of online surveillance tools in place that track their Internet movements and collect personal information (Vaida, 1/26). Meanwhile, House Commerce Committee Chair Tom Bliley (R-Va.) is "stepping up his scrutiny of online drug sites." In a letter to President Clinton this week, he complained that executive action giving the FDA regulatory authority over online drugstores was premature and failed to incorporate recommendations by a commission established to study the issue (Gruenwald, TechnologyDaily/P.M., 1/26). According to the CHCF survey, 33% of online users believe the government should regulate health Web sites, while 30% are not sure who should oversee the industry. Twenty percent think the industry should remain self-regulated (CHCF release, 1/27). For more information on e-health or to read the report, go to http://ehealth.chcf.org.