HealthLawProf Blog

Editor: Katharine Van Tassel
Akron Univ. School of Law

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Monday, March 24, 2008

PatientsLikeMe Website

The New York Times reported on Sunday about a new website, PatientsLikeMe, that permits patients to share medical data and learn more about treatments, drug doses, clinical trials and symptoms of a variety of diseases.  The website raises some interesting issues including how the internet distributes data to patients perhaps encouraging self-medication as well as the privacy concerns from the public sharing of such health data (with some quotes from Professor Mark Rothstein).

  At first glance, the Web site looks like just any other online community, a kind of MySpace for the afflicted. Members have user names, post pictures of themselves and post updates and encouragements. As such, it’s related to the chat rooms and online communities that have inhabited the Internet for more than a decade.

But PatientsLikeMe seeks to go a mile deeper than health-information sites like WebMD or online support groups like Daily Strength. The members of PatientsLikeMe don’t just share their experiences anecdotally; they quantify them, breaking down their symptoms and treatments into hard data. They note what hurts, where and for how long. They list their drugs and dosages and score how well they alleviate their symptoms. All this gets compiled over time, aggregated and crunched into tidy bar graphs and progress curves by the software behind the site. And it’s all open for comparison and analysis. By telling so much, the members of PatientsLikeMe are creating a rich database of disease treatment and patient experience. . . .

Yet even doctors who consider themselves advocates of online medical information raise concerns about patients self-medicating or self-treating. Erik Ensrud, a neurologist at Brigham and Women’s Hospital in Boston, specializes in many of the diseases that PatientsLikeMe focuses on. “The nervous system is the most complicated system in the body,” he says. “It’s so often much more difficult to quantify and study than we think it will be.” . . .

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.” . . . .

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.” . . .  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. . . . .

PatientsLikeMe raises many more questions and quandaries than it answers.  Joe Heyman, a practicing physician in Amesbury, Mass., and the chair-elect of the A.M.A.’s board of trustees, praises the potential benefits of a tool like PatientsLikeMe for patients. He’s just uncomfortable with who’s minding the toolbox. “The idea of them is a wonderful thing,” he says. “But you know, as a physician I have a code of ethics. We have licensing boards and accreditation and all these people keeping an eye on us.” Heyman suggests that if physicians themselves aren’t sole stewards of the patient data — his first choice — then there should be some national standards or a law that covers a company like PatientsLikeMe that traffics in such data.

Heyman is also uncomfortable with how PatientsLikeMe encourages patients to take their medical information and then act on it. “Sometimes patients misunderstand what a doctor says to them,” he says, “so by the time it gets to the third or fourth party it’s like a game of telephone. It’s not as reliable as coming from the horse’s mouth.”

Heyman may be speaking from the perspective of the injured party — PatientsLikeMe could be seen as a direct challenge to physicians’ omniscience — but there’s still something to his concerns. PatientsLikeMe not only lets members track their disease; it also tacitly encourages them to take action. While PatientsLikeMe advises users to consult a doctor before changing their treatments or dosages — patients can print out an exhaustive status report, replete with graphs and charts, to take on doctors’ visits, and personal physicians can register as caregivers on the site — there will inevitably be patients who treat the Web site’s apparent rigor and depth as a substitute for a physician’s training and expertise.

Erik Ensrud, the neurologist at Brigham and Women’s Hospital, worries that patients could spot an animal study or early-stage trial investigating an off-label usage of a drug and then start taking that drug in the hope that the researchers are onto something. “Even if a treatment seems promising, it could result in a very serious reduction in lifespan,” he suggests. “We’re talking survival.” . . .


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