Social networks like PatientsLikeMe let people take charge of their own care–changing the humor of remedy exploration and the practice of medicine

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Illustration by Nick Dewar

By Catherine Arnst

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CBS-BusinessWeek Collaboration

The CBS Evening News with Katie Couric has investigated by what means patients can find reliable medical advice online and looked at the emergence of medical social networks, in a series called Second Opinion: Medicine Online. You can view these reports at cbsnews.com.

Medicine has continually been a top-down affair. Doctors, drug companies, regulators, and researchers are the expert gate-keepers, telling patients what they need to know. Even their own sanatory records are locked away to patronize their privacy. So what would happen admitting that critically ill patients joined together, obtained their personal information, and made it the community?

Just of the like kind a real-world experiment is under tendency of action at a Web-based social network started by the company PatientsLikeMe. The two-year-old venture has even now signed up 23,000 participants in five chronic-illness categories—amyotrophic lateral sclerosis (ALS), Parkinson’s disease, HIV/AIDS, multiple sclerosis, and mood disorders.

On the company’s Web site, PatientsLikeMe members are charting their medical histories in minute detail, sharing their most not to be disclosed information with one another and the world at vast, often with photos and real names attached. To make money, the company aggregates these records, stripped of identifiers, and sells the information to drug, device, and insurance companies, totally with the consent of its patient-members. The buyers can undermine a rich rib of data on a variety of chronic illnesses that is simply not available anywhere else. In return, patients get the hope that they are furthering progress toward cures.

This new patients-as-partners model is often called Health 2.0. PatientsLikeMe and a proliferation of similar startups are building a unaccustomed business predicated on the belief that the understanding of crowds of patients will bring insights, solace, and most of all, power.

Power because, to the degree that it turns loudly, patients talking among themselves on a global scale with complete transparency produces all kinds of unexpected results. Drug side goods can be reported to regulators by the patients experiencing them, without waiting for the manufacturers to come forward. Pharmaceutical companies have power to application social networks to recruit subjects with haste in the place of clinical trials, speeding up the pace of research. For that matter, patients be able to sincerely band together and run their own clinical trials, leaving drug companies and physicians exhausted of the loop.

In a development that has caught the worried attention of the medical Establishment, more 250 members of Patients- LikeMe with ALS are testing lithium, a generic drug used to treat mood disorders, by no corporate or of the college imprimatur. The patient-run trial was instigated by Humberto Macedo, a 42-year-old systems analyst in Brasilia City, Brazil, diagnosed in March 2007 by ALS, an incurable neurodegenerative ail.

Macedo was confined to a wheelchair, barely able to speak, soon after he was diagnosed. He could still use a computer, though, and he quickly joined the ALS group on PatientsLikeMe. Researching his situation upon the Internet, Macedo discovered a report on a inferior Italian study in which lithium appeared to slow progression of ALS. No company would have being willing to science a confirming trial of a drug that went off patent decades past, against a disease that strikes only 4 to 8 people per 100,000. So Macedo stepped up, proposing to fellow PatientsLikeMe members that they test it themselves.

In December 2007 he posted a spreadsheet for recording symptoms and vital signs; ALS patients started agitation lithium daily and documenting their results. The equal in number of participants in the test quickly reached 250, more than five times as many as in the Italian study. Few doctors are willing to accept the results, nor would any medical journal issue them, from that time the trial does not meet scrupulously nice according to principles standards. “But we can’face to face count upon the body medical experts to beget biassed in ALS, and we don’t have at all time to lose,” Macedo says via e-mail. “At least we have tried something to help ourselves.”