Big Brother is watching
Big Brother is watching
Study finds no one surfs the Internet alone
Case managers who use health care Web sites or Web-based applications to monitor and manage the health of their patients — as well as those who are planning to expand the role of the Internet in their practices — should pay close attention to the latest findings on health care information privacy on the Internet recently released by two organizations dedicated to improving the quality of health care on the Internet.
Consumers accessing the Internet in the privacy of their homes or offices often are willing to share a wide range of personal information with health care Web sites, but a recent investigative report by the California HealthCare Foundation in Oakland and the Internet Healthcare Coalition in Washington, DC, found that even some Web sites with privacy policies don’t adequately protect against misuse of that information by marketers and other third parties.
Researchers first surveyed 1,000 consumers about their health care Internet practices and then conducted a comprehensive investigation of the 21 most popular health care Web sites. The consumer survey revealed the following:
• 88% of Internet users did not want health Web sites to share information with other parties.
• 77% of Internet users said they did not want information collected about them without their knowledge.
• 17% of Internet users who do not regularly use health Web sites avoid them due to privacy concerns.
• 75% of Internet users are "very concerned" about the sites with which they’ve registered possibly sharing their personal health information with a third party.
• 33% of Internet users think the government should regulate health Web sites.
• 30% of Internet users think the sites should be regulated but aren’t sure by whom.
• 20% of Internet users surveyed think the industry should be self-regulated.
The survey also revealed that these factors help bolster consumer confidence in health Web sites:
• The site is recommended by their physician or a health care professional.
• The site has a published privacy policy that states information will not be shared with advertisers, other sites, or marketing partners.
• The site gives users an opportunity to see who has access to their user profile.
• The site allows the user to make choices about how much information is shared and how it is shared.
The practices consumers said caused them to lose confidence in health care Web sites include:
• The site shares information with advertisers or marketing partners.
• The site automatically collects information about the user.
• The site is sponsored by an insurance or pharmaceutical company.
The results of the privacy report released at the recent eHealth Ethics Summit in Washington, DC, indicate that consumers are right to exercise caution. Here are the report’s key findings:
• Visitors to health Web sites are not anonymous, even if they think they are.
• Health Web sites have privacy policies in greater proportion than nonhealth sites.
• The privacy policies of health sites fall short of truly safeguarding consumers.
• Many health Web sites do not follow their own privacy policies.
• Consumers are using the sites to better manage their health, but their personal information may not be protected adequately.
• Health Web sites with privacy policies that disclaim liability for the actions of third parties on the site violate their own privacy policies.
In fact, the report revealed that third-party ad networks receive access to information that allows them to build detailed, personally identified profiles of individuals’ health conditions and patterns of Internet use without consumers’ knowledge or consent, says Sam Karp, chief information officer for the California HealthCare Foundation.
The privacy report suggests health care organizations take these four steps to improve privacy safeguards on their sites:
• Perform a thorough evaluation of their own privacy policy and those of any companies with which their site interacts.
• Close the loop between privacy policies and practices by measuring the policies of health sites against the information gathered on those sites.
• Provide Web site visitors more anonymity by limiting the sharing of information gathered.
• Work with other health leaders to develop a standard privacy policy.
"Consumers can also help protect themselves as they use the Internet for health purposes," adds Karp. He suggests every health Web site user take these steps:
• Read the privacy policy of the site.
• Take caution when providing personal health information or identification to a health site.
• Refuse to provide personal information to any Web site that includes a banner ad.
"In the present environment, banner ads are a sure sign that information you provide to the site is being provided to marketing companies," says Karp. "If the site allows you, always double click to opt out of your information being collected. If you don’t, that page on diabetes treatment you visit and any information you share about your diabetes and its treatment can and most likely will go to marketers along with your name and e-mail address."
(For more details about the privacy report or the consumer survey, visit the organizations’ Web sites at www.chcf.org or www.ihealthcoalition. org.)
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