The CBS Evening News with Katie Couric has investigated how 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 always 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 medical records are locked away to protect their privacy. So what would happen if critically ill patients joined together, obtained their personal information, and made it public?
Just such a real-world experiment is under way at a Web-based social network started by the company PatientsLikeMe. The two-year-old venture has already 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 private information with one another and the world at large, 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, all with the consent of its patient-members. The buyers can mine a rich vein 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 new business predicated on the belief that the wisdom of crowds of patients will bring insights, solace, and most of all, power.
Power because, as it turns out, patients talking among themselves on a global scale with complete transparency produces all kinds of unexpected results. Drug side effects can be reported to regulators by the patients experiencing them, without waiting for the manufacturers to come forward. Pharmaceutical companies can use social networks to recruit subjects quickly for clinical trials, speeding up the pace of research. For that matter, patients can simply band together and run their own clinical trials, leaving drug companies and physicians out of the loop.NO TIME TO LOSE
In a development that has caught the worried attention of the medical Establishment, some 250 members of Patients- LikeMe with ALS are testing lithium, a generic drug used to treat mood disorders, with no corporate or academic imprimatur. The patient-run trial was instigated by Humberto Macedo, a 42-year-old systems analyst in Brasilia City, Brazil, diagnosed in March 2007 with ALS, an incurable neurodegenerative disease.
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 condition on the Internet, Macedo discovered a report on a small Italian study in which lithium appeared to slow progression of ALS. No company would be willing to finance a confirming trial of a drug that went off patent decades ago, 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 taking lithium daily and documenting their results. The 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 publish them, since the trial does not meet rigorous scientific standards. "But we can't count on medical experts to get interested in ALS, and we don't have any time to lose," Macedo says via e-mail. "At least we have tried something to help ourselves."