Starting Points: PatientsLikeMe

May 30, 2010

When Patients Meet Online, Are There Side Effects?

Brian Stauffer

By NATASHA SINGER

COULD we cure diseases faster, or at least better control them, through crowd-sourcing?

That is the premise behind social networking sites like CureTogether.com and PatientsLikeMe.com, which offer online communities for patients and collect members’ health data for research purposes.

PatientsLikeMe provides forums where more than 65,000 members with epilepsy, multiple sclerosis and more than a dozen 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.”

Moreover, in a world where 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 signal for drug safety problems.

PatientsLikeMe has an innovative for-profit business model, too. It sells health data, gathered from member profiles but with certain identifying information removed, to drug makers and others for scientific and marketing research.

Jamie Heywood, the company’s chairman, says both patients and drug makers delve into that data to meet their own needs.

Members can seek out patients of the same age, sex, and disease progression, whose profiles are displayed on the site, to see which drugs or doses worked for them. Drug makers can pinpoint subgroups — say, severely depressed middle-aged men — who reported the greatest improvement on a particular medication.

“What we have done is made a system that allows you to think about personalized medicine,” says Mr. Heywood. He co-founded the site in 2004 with his brother Ben and a friend after another brother, Stephen Heywood, developed amyotrophic lateral sclerosis, or A.L.S., commonly known as Lou Gehrig’s disease. (Stephen died in 2006.)

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

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 who has studied how advertisers market to consumers based on their online behavior. “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. Along with offering health resources, many of these sites are also engineered to foster an environment where patients effectively promote treatments to other patients, without a doctor as intermediary.

The lines become blurry in these new arenas. 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 but might not prominently display that fact to participants. Other sites collect consumer health data to help drug makers aim at specific kinds of consumers, using psychological cues.

Unlike television viewers, who can immediately spot direct-to-consumer drug ads, consumers on some health sites may not fully understand that they could be subject to marketing or marketing research, even if they have read the site’s privacy policy.

“We are talking about a digital pharma stealth economy that is emerging,” says Jeff Chester, the director of the Center for Digital Democracy, a nonprofit 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 health care providers use and disseminate patients’ information, but entities like consumer health Web sites are not subject to it. The Food and Drug Administration, meanwhile, which strictly regulates direct-to-consumer drug commercials and print ads, is still developing a policy on drug marketing through social media.

In many ways, PatientsLikeMe is open and clear about its data collection and how it makes its money.

The site’s privacy policy explains that it shares members’ data, shorn of certain personal identifiers, with drug makers and others. Even as the policy encourages people to share their health information so others can learn from their experiences, it advises members that the more personal details they disclose, the more they risk being publicly identified.

For corporate clients, the site also functions as a sophisticated data-mining tool that allows them to better pinpoint consumers and to develop new or improved drugs. PatientsLikeMe adopts a more bottom-line approach to companies than it does when advocating its greater-good policy to consumers.

“Yesterday, you couldn’t engage with patients because of regulatory conflicts and lack of patient access,” one corporate pitch says on the site. “Today, all that has changed. It’s time to interact directly with your new customers: patients.”

Among the services the site provides to its corporate clients is analysis of members’ conversations, broken down by age, sex, disease progression and treatments, to “learn not only what’s being said about your brand, but by whom.” Another service allows drug makers to conduct market research on 25 to 50 of the most active users on the site — typically those who post messages often and have emerged as opinion leaders — who consent to participate. Afterward, drug makers can refine their marketing efforts based on the effect of the program “on patient dialogues across the entire community,” the site says.

Ms. Dwyer of Pace says she has been “really, really shocked at the blatant manipulative language” that some sites use to describe their corporate services to industry versus how they describe themselves to consumers.

Ben Heywood, president of PatientsLikeMe, says the program for drug makers that focuses on the site’s most active users is not meant to promote specific messages. After participating in the program, he says, members do not disseminate industry ideas on the site. Some members, he says, simply want to share their opinions with drug makers, but they aren’t paid to do so.

Jamie Heywood says that such data analyses provide insight for drug makers on how best to reach patients, but the site itself does not market drugs to its members. Moreover, the Heywood brothers say, the site openly describes its industry services.

“Our objective is to teach the company,” he says, “not teach the patient about the company’s products.”

Still, some of PatientsLikeMe’s competitors have taken a less aggressive approach to how they market patient data.

CureTogether.com, for example, has occasionally earned money by e-mailing advertisements aimed at its members who have 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 on the site to see or give drug makers access to members’ health data in any form, he says. “The best way to protect people,” Mr. Reda says, “is to collect as little information as possible.”