Inside 1to1:Privacy

Trust In A New Era

August 1, 2008

By Larry Dobrow

To put it mildly, there is no shortage of health information on the Web nor a shortage of people availing themselves of this information. A recent Pew Internet survey revealed that eight of 10 Internet users seek out health info online, while 58 percent used that information to make a treatment decision. At the same time, Pew found that 30 percent of respondents with chronic health conditions are "overwhelmed" by the volume of available information.

Hoping to remedy the information overload without further contributing to it, a handful of former Amazon execs joined together in March 2007 to form Trusera (www.trusera.com). The site, which launched formally this June, offers an antidote--pun intended, totally--to jargon-stuffed online health-information providers by asking users to share their stories and paths to recovery.

"It speaks to the power of other people and their willingness to share their experiences," says founder and chief executive officer Keith Schorsch. "People trust information from their peer set."

Schorsch has great empathy and respect for Trusera's users. In fact, an incident from his recent past informed the site's development. After leaving Amazon in 2002 for a family sabbatical, he was bitten by a tick. Over the next three months, he became progressively sicker. Only when a friend suggested that he might have Lyme Disease did Schorsch receive proper treatment.

"I was on the west coast, where nobody knows anything about Lyme Disease," he recalls. "Had I been in a diner in the Bronx, nine out of ten people would've said, 'You have a rash and flu in July? That's Lyme Disease.' It got me thinking about how we can make peer information available on a grander scale."

But while Trusera--the name is a condensed version of "trust in a new era"--has seemingly achieved that scale, any site in which individuals willingly serve up a chunk of their personal health information will come under scrutiny for its privacy practices. To that end, the company has focused on access control: According to Schorsch, every journal entry or story a user creates can be kept private or shared with the entire Trusera community.

"The information is as permanent as users want it to be. They can take it off, edit it, anything they want," he promises. Of course, some pundits note that the sharing and public airing of such information tends to be much more permanent than its creator usually expects. "It's a little naïve to think you can just pull something back," says Fred Cate, distinguished professor at the Indiana University School of Law and director of the Center for Applied Cybersecurity Research. "If you post something, you have to assume that it'll be seen by everyone forever. Even if you think you have control, it's like with email. It's illusory."

Schorsch understands the skepticism: "There's obviously more sensitivity with information like this than with what you have in other online communities." Before going live, he notes, Trusera conducted its share of research with members of online autism and breast-cancer communities. "We tried to understand what they'd be comfortable sharing and under what conditions they'd share. They said they wanted control and I think we've given that to them," he adds.

Both Cate and Alan Chapell, president of privacy consultancy Chapell & Associates, say that Trusera looks solid on the privacy and security fronts. Still, they express a concern or two. "What might be something to look out for is that these sites usually lead to a fair amount of disclosure about others," Cate notes. "Somebody will say, 'I'm taking care of my father or my wife,' then post information about them to get information for himself."

Chapell disagrees, arguing that this is nothing new, online or off. "It's like the guy who goes to the doctor and says, 'My, uh, "friend" has syphilis. Can you prescribe something?'"

Chapell's big question about Trusera, rather, cuts more to its business model than to its privacy and security infrastructures. "I'm confused about exactly what they're trying to do, aside from build a community. 'Build it, they will come, figure out how to monetize it later'--that can work, but what's their end game? If it's selling aggregate information to pharmaceutical or insurance companies, that can have some [privacy] implications." For his part, Schorsch stresses, "We don't share any information, except in aggregate and anonymously."

Cate takes issue with the site's privacy policy--not for its content so much as for its presentation and 2,914-word length. "For here and other places, what I'd like to see is a tutorial: 'Understand this fact about sharing information on the Internet: it's difficult to control information once it's out there.' Nothing to scare people, but just something to bring them up to speed. Most people aren't getting past the language in these policies."

In the same breath, Cate lauds any entity that "fills in support that the medical system does not provide," and certainly Trusera contributes in that regard. In the months ahead, look for the company to push for greater awareness--Schorsch declines to share page-view data, but claims that the site tripled views since its first month--and further refine its customer experience.

"Our brand stands for people taking action, not just sharing for emotional-support reasons, which is so much of what you've seen so far with health [information]. We've been locked into message boards for almost 20 years now. We think we're on the way to providing a better experience."

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