Is Your Medical Information Safe On-Line

The following is from Consumer Reports Healthy Blog

Maybe not, according to four watchdog groups, which complained to the Federal Trade Commission (FTC) last week that major drug, health, and information-technology companies might be compromising consumer privacy with tools used to gather information and market their products and services online. And yesterday, the FTC released its own preliminary plan on how to protect privacy online, including a “do not track” feature that would allow consumers to request that their online searching and browsing activities not be mined.

The complaint from the watchdog groups—filed by the Center for Digital Democracy, the U.S. Public Interest Research Group, Consumer Watchdog, and the World Privacy Forum—says that companies might be collecting information online and using it in ways that puts people’s private medical information at risk. The companies and web sites named include Google, Yahoo, Microsoft, AOL, WebMD, QualityHealth, Everyday Health, and HealthCentral.

The complaint alleges that those and other companies have tools at their disposal that allow them to eavesdrop on discussions on social media or health websites; target people with chronic conditions such as depression or diabetes who have sought information or products online; use services such as Twitter to spread “viral” messages about products; and launch seemingly independent websites that purport to offer unbiased information but are really fronts for marketing products.

To combat those potential misuses, the complaint asks the FTC to:
• Examine the data-collection practices of drug companies and firms involved in advertising prescription drugs for those companies.
• Review the privacy policies of drug company, health, and social networking sites.
• Require companies engaged in data collection and digital marketing to reveal the tools and techniques they use.
• Investigate whether seemingly independent health bloggers are subsidized by drug or other companies.
• Work with the Food and Drug Administration (FDA) and other government agencies to develop policies and regulations concerning the collection and use of data mined from health sites.

“Pharmaceutical and online health information companies now have unprecedented abilities to take advantage of consumers,” said Jeff Chester, executive director of the non-profit Center for Digital Democracy. “Consumers should not be subject to unfair, deceptive, and non-transparent techniques designed to encourage them to seek out forms of treatment, brand medications, or be subject to a high powered data collection system that undermines their privacy.”

Consumers Union, the publisher of Consumer Reports and this website, has voiced similar concerns in recent years. “We agree that the marketing techniques described in the complaint are alarming and warrant immediate attention from the FTC,” said Ellen Bloom, senior director of federal affairs in Consumers Union’s Washington, D.C. office. In testimony last year, Consumers Union asked the FDA to probe whether drug companies were using social networking sites to dispense information about their products and also silently subsidizing websites that give medical advice to people with certain diseases.

The complaint to the FTC comes as drug companies and some health marketers are pressing the FDA for new rules that would allow them to expand digital and social-media advertising. The complaint urges the FDA to await the outcome of the FTC investigation before issuing such rules.

A Microsoft spokesman, Frank Torres, said the complaint “got it wrong” when it comes to its personal health-record site, HealthVault, and that the privacy policies are clearly spelled out on the site. Other companies cited in the complaint said they were still reviewing the report.

The FTC’s proposed “Do Not Track” mechanism is one recommendation made in a comprehensive 122-page report on online privacy. It states that industry efforts to address privacy through self-regulation “have been too slow, and up to now have failed to provide adequate and meaningful protection.” And FTC chairman Jon Leibowitz said in a statement that the agency “will take action against companies that cross the line with consumer data and violate consumers’ privacy—especially when children and teens are involved.”
—Steven Findlay, M.P.H., senior health policy analyst