Users worry about privacy of on-line health info

Most will trust privacy policies, physician referral

Consumers realize the health information they place on the Internet is vulnerable, but they’ll use health sites if they are given assurances of privacy, according to a survey commissioned by the California HealthCare Foundation in Oakland and the Internet Healthcare Coalition in Washing-ton, DC.

The survey sampled the opinions of more than 1,000 on-line adults. "[The respondents] didn’t say, We’re unwilling to use the Internet for health care unless some sort of firewall is created that guarantees total anonymity,’" says Charles Stewart, communications officer for California HealthCare Foundation. "They are willing to use it if they receive assurances they can trust." (For more on the discrepancies between stated privacy policies for Web sites and actual practices, see story, p. 52.)

Survey respondents who seek health information on the Internet are most concerned that sites, with which they have registered, will share their personal health information with a third party without their permission. In fact, 80% of the respondents say they would not be willing to submit information if it were to be shared with advertisers or marketers. Respondents also hold a negative opinion of sites that automatically collect information about visitors or that are sponsored by an insurance or pharmaceutical company.

The respondents realize that they can take steps to limit access to their personal information, but few make the effort to do so, Stewart says. "More than 80% of the respondents know what cookies are, but only 4% disable them so the cookies can’t gather information." This low percentage might be due to the effort it takes to disable the mechanism. "It’s something you have to think about. You have to know what it is and where it is," he says.

Consumers also expect that some information will be collected about them, Stewart continues. "Only a relatively small percentage — between 14% to 19% — won’t attempt to gather information from the Internet because they fear information about them being captured.

"[In addition], people will give up information about themselves in return for information and services on-line," he says. "They are willing to live with that. They just want some sort of guarantees of privacy that they believe they can trust."

Few visitors to health-related Web sites seriously consider the issues of privacy at this time, says Peter Kane, MSW, LCSW, BCD, executive director of the National Coalition for Patient Rights in Lexington, MA. "The evidence of violations to the general population is clearly not apparent to them," Kane says. "They don’t understand what it is that they might lose." As privacy violations increase, the public will become more actively concerned, he adds. (For information on how providers can help protect their patients, see p. 54.)

According to the survey, health care Web site visitors are most comfortable with sites that have these attributes:

• are recommended by their physician;

• have a published privacy policy that states information will not be shared with advertisers, other sites, or marketing partners;

• give visitors the opportunity to see who has access to their profiles;

• allow visitors to make choices about use of information.

The best thing about the survey is that it creates a baseline of what consumers actually do want, expect, and fear in terms of the privacy of their information and their interaction with Web sites, Stewart says. "Now we have data as opposed to people attempting to advocate a certain position that is in the best interests’ of the consumer. We are no longer operating in a vacuum."