Health 2.0: Patients as Partners

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The site gets patients to participate by offering them free tools for tracking their medications, symptoms, and health outcomes, and storing the data in easy-to-read charts. A sophisticated search engine allows members to find others whose medical profiles most closely match their own, making note-sharing that much easier.

Several pharmaceutical companies, universities, and research labs have purchased data from PatientsLikeMe, and the founders believe the business will turn a profit in the next 12 to 24 months. Drug companies are also paying fees to recruit participants for clinical trials. Novartis (NVS) was one of the first to sign on, in May 2008, in order to speed up the start of a 1,200-patient study of a new medicine for multiple sclerosis. "We were in a real crunch in terms of finding eligible patients," says Trevor Mundel, head of development for Novartis. "We saw an immediate uptick in interest once we partnered with them," accelerating the trial by a few months.

PRIVACY ISSUES

All these deals are part of the Heywoods' overarching mission, to speed research by encouraging collaboration between patients and researchers. Such partnerships are usually difficult to pull off because of the Health Insurance Portability & Accountability Act of 1996 (HIPAA), which strictly limits the flow of patient records to insurers, employers, and other third parties. But HIPAA doesn't muzzle the patients themselves. And that opens up a regulatory escape clause.

The PatientsLikeMe Web site explains to members as soon as they sign on that aggregated information will be sold commercially, and that personal records are visible to others—including, inevitably, staff of drug and insurance companies. The fact that so many patients agree to these terms stuns health-care experts. "I am constantly amazed at what patients will put out there," says Jennifer Texada, director for new media at M.D. Anderson Cancer Center in Houston.

And no matter how often participants say they don't care who knows of their illnesses, there is always the risk that patients will be harmed when personal information is exposed. "Discrimination in health care, housing, and employment is a fact of life. The consequences of disclosure can be very serious," warns Susan M. Dooha, executive director for the Center for Independence of the Disabled in New York.

Many patients find all this talk of consequences and concerns immaterial and patronizing. "I welcome partnerships with pharma," says PatientsLikeMe member Ryan Rollinson, a 22-year-old Minneapolis resident who is HIV positive. "That's how we can speed up progress." Steven Saling, a 40-year-old ALS patient in Boston, describes a sense of liberation through PatientsLikeMe. "Current HIPAA regulations, while well intentioned, keep researchers from connecting the dots to understand what causes ALS," he says.

The privacy issue could become more fraught as medical networks grow. "It only takes one patient with a bad experience to change the culture," says Texada. Yet even when privacy violations occur, as they surely will, patients who have embraced Health 2.0 are unlikely to give up their freedom to network. As Novartis' Mundel acknowledges, "Patients will keep pressuring all of us in the direction of more openness."

See our slide show about Health 2.0: Patients on Social Networks

Business Exchange related topics:
Health 2.0
U.S. Healthcare System
Consumer-Driven Healthcare
Bootstrapping a Startup

Arnst is a senior writer for BusinessWeek based in New York.