In 1997, Stephen Heywood, a twenty-eight-year-old custom home builder from Palo Alto, California, noticed that he couldn't turn a key with his right hand. A year later, he was diagnosed with Lou Gehrig's disease (also called amyotrophic lateral sclerosis, or ALS). It's a neurodegenerative disease that paralyzes and eventually kills its victim. As soon as the diagnosis was made, Stephen's brothers, James and Ben, both MIT engineers, struggled to learn as much as they could about the disease. But they were stunned by the paucity of information available to them, even as members of the academic community with broad access to information resources. With thirty thousand cases in the United States, ALS is not as common as the better-known multiple sclerosis, but it's just as debilitating. Yet ALS patients had no efficient way to share information about their disease with one another, or with their doctors, so both diagnosis and treatment were delayed. What's more, it was extraordinarily hard to find patients just like Stephen, who by his thirty-fifth birthday was breathing on a ventilator and confined to a wheelchair.
What these patients needed, the Heywood brothers thought, was good data on their condition and treatment options. In particular, they needed answers to two questions: Given my status, what's the best outcome I could hope for? And how do I achieve it? Doctors couldn't help, because they saw so few patients with these afflictions. Yet if they could gather people with rare conditions together, they'd form a community, and if they aggregated information from that community, they could provide meaningful clinical data to patients and their doctors. This would help both doctors and patients make more informed treatment decisions.
Stephen died in 2006 when his ventilator disconnected in the middle of the night. Yet the Heywood brothers were determined to improve the lives of thousands of people with ALS—by forming a new online community. Two years before Stephen's death, in 2004, with the help of longtime friend Jeff Cole they launched PatientsLikeMe, a Web-based community of patients with rare or life-altering disease states such as ALS, progressive supra-nuclear palsy, and corticobasal degeneration.
PatientsLikeMe took off and has become one of the Web's most vibrant health care communities. Its members—sixty thousand and growing—share personal details of their medical history with fellow members. The data they contribute is aggregated to track patterns and responses to various reported treatments. "People think we are a social networking site," says cofounder Ben Heywood. "But we're an open medical framework. This is a large-scale research project."
Whereas most health care sites fervently guard their patients' data, the Heywoods believe sharing health care experiences and outcomes is good, and perhaps even integral, to speeding up the pace of research and fixing a broken health care system. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. The health care system becomes more open and this in turn improves outcomes for patients, doctors, and drug makers. New treatments can be evaluated and brought to market more quickly. Patients can learn about what's working for other patients like them and, in consultation with their doctors, make adjustments to their own treatment plans.
An example of this is David Knowles, a fifty-nine-year-old property manager who lives in the U.S. Virgin Islands, who has struggled with multiple sclerosis (MS) for ten years. Knowles was searching online for information about a new treatment for MS when he came across Patients-LikeMe. …Knowles wanted to know more about a drug called Tysabri. …One of his doctors was suggesting the drug, and PatientsLikeMe offered data from hundreds of patients taking Tysabri. After reviewing their results, Knowles decided that in his case the risks outweighed the rewards, and he went to his doctor with a list of other treatments he wanted to explore instead. "I feel like I'm in charge of my medical care now," he says. "Of course, I still listen to my neurologists, but now it's more of a team approach."
Knowles represents the future of medicine, with engaged patients becoming prosumers of wellness rather than passive consumers. This is a dramatic change from current practice. For centuries the medical industry operated under the following proposition: doctors are smart because they have education and hands-on experience, and patients are medically dumb because they have no relevant knowledge.