It’s a way to get real-world information on diseases and treatments, from many kinds of people in different places, faster. That is the premise behind social networking sites such as CureTogether and PatientsLikeMe, which offer online communities for patients.

Sharing pills and pains online

PatientsLikeMe provides forums where more than 65,000 members with epilepsy, multiple sclerosis and other disorders are encouraged to share details about their conditions and the success or pitfalls of specific drug treatments.

“When patients share real-world data, collaboration on a global scale becomes possible," the site says. “New treatments become possible." And as serious side effects often emerge only years after a new medication enters the market, such real-time information from real-world patients may also provide an early warning on drug safety issues.

Push past privacy: Online health forums may allow marketeers to target drug advertisements better.

But pharmaceutical crowd-sourcing also raises important questions about the trade-off between the benefits of information sharing and the risk of patient exploitation.

Potential for misuse

Some people share their health information for the sake of the greater good. Yet they typically have no way of knowing whether their health profiles contribute directly to the development of more effective treatments—or are simply mined to create more effective drug marketing.

“Do we need to protect people who have illnesses from being exploited?" says Cathy Dwyer, an associate professor at Pace University, New York, US, who has studied how advertisers market to consumers based on online behaviour. “It’s a very tricky line because people absolutely need emotional support when they are dealing with illness." PatientsLikeMe is one of many sites that promote the idea of the “e-patient", a health consumer empowered by online information gathering. Alongside health resources, many of them foster an environment where patients effectively promote treatments to other patients, without a doctor as intermediary. That’s where the lines become blurry.

There are unbranded “disease awareness" communities—for example, on Facebook or YouTube—where a drug maker may pay people to moderate patient forums or give testimonials without prominently displaying that fact to participants. Other sites collect consumer health data to help drug makers aim at specific kinds of consumers using psychological cues.

Consumers on some sites may not fully understand that they could be subject to marketing or marketing research, even if they’ve read the site’s privacy policy. “We are talking about a digital pharma stealth economy that is emerging," says Jeff Chester, director of the Center for Digital Democracy, a non-profit group that works to safeguard user privacy. “You don’t know who is being paid to moderate. You don’t know who’s listening in to your conversation. You don’t know what exactly they are focused on and what they are doing with the information." The Health Insurance Portability and Accountability Act of 1996 restricts the way healthcare providers use and disseminate patients’ information, but entities such as consumer health websites are not subject to it. Meanwhile, the US food and drug administration, which strictly regulates direct-to-consumer drug commercials and print ads, is still developing a policy on drug marketing through social media.

Safeguarding user privacy

In many ways, PatientsLikeMe is open and clear about its data collection. It also advises members that the more personal details they disclose, the more they risk being publicly identified.

However, some of PatientsLikeMe’s competitors take a less aggressive approach to marketing patient data. CureTogether.com, for example, has occasionally earned money by emailing targeted advertisements to members with certain health conditions on behalf of drug makers seeking participants for clinical trials, says Daniel Reda, who co-founded the site with his wife, Alexandra Carmichael. But CureTogether does not post a person’s profile for other members to see or give drug makers access to their health data.

“The best way to protect people," Reda says, "is to collect as little information as possible."

©2010/THE NEW YORK TIMES

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