Practicing Patients

Thomas Goetz writes in the NY Times:

[…]

PatientsLikeMe started with a single case of amyotrophic lateral sclerosis. In 1998, Stephen Heywood, a 29-year-old carpenter, learned that he had A.L.S., a neurodegenerative disorder commonly known as Lou Gehrig’s disease. Jamie, his older brother, quit his job to find a cure. An M.I.T.-trained mechanical engineer with a knack for neuroscience, Jamie founded the A.L.S. Therapy Development Institute in Cambridge, Mass., the following year. So began a radical quest to save Stephen’s life. They tried experimental drug therapies, they tried a stem-cell transplant and they tried a neural implant, each effort building on the previous one. After six years, Stephen was among the most documented A.L.S. patients in the world.

The sheer volume of Stephen’s data gave Jamie an idea — a notion hatched while browsing Match.com, the online dating site. The aspiring singles there had posted a trove of information about themselves — their likes and dislikes, their dating histories, their height and weight — all to find a perfect match. Jamie realized that a similar tool might be useful in the realm of disease, for treatment rather than romance. If patients shared their information and could find someone with a similar symptomatology and disease history, then they might better plot their own course of treatment and care. And it didn’t just have to be A.L.S. — it could work for any disease.

[…]

Stigma endures in more material ways, as well — most pointedly in concerns over medical privacy. For decades, our personal health information has been protected largely by disorganization and chaos, suggests Mark Rothstein, a bioethics and health-policy professor at the University of Louisville. But now, with major health-maintenance organizations and hospitals finally adopting electronic records, fallow storerooms of paper records are being converted into neat and portable digital form. “Technology is racing ahead of society,” says Rothstein, who advises the Department of Health and Human Services on electronic privacy. “If this is sensitive information — sexual history, mental illness, substance abuse — even if nothing bad happens, people are subject to stigma and embarrassment.”

The government has tried to protect patient privacy, most notably with the Health Insurance Portability and Accountability Act, or Hipaa. Enacted in 1996 to help streamline the adoption of electronic records, Hipaa was modified in 2002 to address concerns over how those records might be misused or distributed to unauthorized people. The law stipulates that if 18 categories of personally identifiable information are stripped from records then they may be transferred for research purposes without a patient’s consent.

Perhaps not surprisingly, Hipaa satisfies no one — not the privacy advocates, who argue against most any form of electronic record, and not the medical researchers, who now face onerous restrictions on their work. PatientsLikeMe upends this dialectic; in technology terms, it routes around the problem. Since the company is an opt-in service and not a health-care provider, Hipaa doesn’t apply. Good thing, really, since the site identifies members’ cities and their ages, two of Hipaa’s 18 prohibited categories of personal information.

But Hipaa is extraneous not just legally but philosophically as well. Many PatientsLikeMe members volunteer even more information from those 18 categories. They not only post their photos but also post photos of their children and spouses. They add brief autobiographies and describe their conditions in precise detail — including potentially embarrassing particulars on sexual function, bladder control or constipation. And though they all have user names, most go by their first names on the site’s forums.

PatientsLikeMe’s privacy policy clearly states that this sharing carries risks. It acknowledges that since anybody can register at the Web site, anybody can look at member profiles. It makes clear that there’s no guarantee that registered members are, in truth, who they say they are. And it nods to the fact that, yes, this is a business, not a public service — some personally identifiable information may be sold to “approved vendors.” But this is boilerplate. The most striking notice is the company’s Openness Philosophy, a manifesto posted prominently on the site.

“Currently, most health-care data is inaccessible due to privacy regulations or proprietary tactics,” it declares. “As a result, research is slowed, and the development of breakthrough treatments takes decades. . . . When you and thousands like you share your data, you open up the health-care system. . . . We believe that the Internet can democratize patient data and accelerate research like never before.”

In 1990, Alan Westin, a political scientist at Columbia University and an expert in privacy issues, offered a useful taxonomy of Americans’ attitudes toward privacy. On one end of the spectrum were what he called privacy fundamentalists — the 25 percent of Americans who feel that their privacy is paramount and that no one, not the government or corporations or their family, should have access to their personal information without explicit permission. At the other end of the spectrum were the privacy-unconcerned — about 15 percent of Americans — who paid no mind to privacy issues and didn’t figure they had anything to hide. In the middle were the vast majority, the 60 percent whom Westin called privacy pragmatists: those who felt that they could give a company they trusted some information — birth date, ZIP code, telephone number — for particular benefits.

The members of PatientsLikeMe aren’t all radicals culled from the privacy-unconcerned, though no doubt some are. Most more likely fit the profile of pragmatists. “I know it sounds like really personal information, but it’s not like I’m putting my phone number up,” says Jennifer Jodoin, a hotel manager in Palm Beach, Fla., who has changed her M.S. medications based on information gleaned at PatientsLikeMe. “I’m not posting my address and saying, ‘Come on by.’ It’s an exchange of information to get help and to give help.”

That pretty much defines pragmatism, and it exemplifies these strategic information-for-benefit exchanges people make like taking a blood test to get life insurance or consenting to a background check to secure a new job. Only now, at places like PatientsLikeMe, information has a currency that’s far more liquid than ever. Converted into data and bundled with information from those like us, private information can be invested for both immediate gains and long-term returns.

And there’s a fortunate side effect to converting your health history into data — it strips it of metaphor, of secrecy, of stigma. It becomes concrete, manageable and valuable. It becomes, just as Sontag suggested 30 years ago, demythicized.

Full story – NY Times