BROTHER’S KEEPERS: Jamie and Ben Heywood (left and center) founded a Facebook-like social network for patients fighting serious illnesses as their brother, Stephen, neared the end of a battle with ALS.
This article is one of a series The Chronicle is featuring this month about leaders who are pushing unorthodox ideas to give philanthropy more power to do good.
In 2004, an online social network known as Thefacebook was launched from Mark Zuckerberg’s Harvard dorm room. Kiva, an early brand in crowdfunding for charitable causes, was on the drawing board.
That same year, Ben and Jamie Heywood created PatientsLikeMe, a company that combined the breakout ideas behind those two now-famous ventures. Today, PatientsLikeMe is a burgeoning online network of some 400,000 people, mostly individuals suffering from one of more than 2,500 diseases. They download their medical information and track the experiences of others with similar illnesses.
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PatientsLikeMe
BROTHER’S KEEPERS: Jamie and Ben Heywood (left and center) founded a Facebook-like social network for patients fighting serious illnesses as their brother, Stephen, neared the end of a battle with ALS.
This article is one of a series The Chronicle is featuring this month about leaders who are pushing unorthodox ideas to give philanthropy more power to do good.
In 2004, an online social network known as Thefacebook was launched from Mark Zuckerberg’s Harvard dorm room. Kiva, an early brand in crowdfunding for charitable causes, was on the drawing board.
That same year, Ben and Jamie Heywood created PatientsLikeMe, a company that combined the breakout ideas behind those two now-famous ventures. Today, PatientsLikeMe is a burgeoning online network of some 400,000 people, mostly individuals suffering from one of more than 2,500 diseases. They download their medical information and track the experiences of others with similar illnesses.
Imagine you’re a 41-year-old with amyotrophic lateral sclerosis, or ALS, which progressively weakens muscles and destroys motor functions. Through PatientsLikeMe, you can track the disease history of others your age, comparing symptoms and treatments. You can also learn how others adapt to do basic things like brush their teeth.
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The social network doubles as a storehouse of medical information. Among those tapping its 35 million data points are researchers and pharmaceutical companies studying cures and treatments. The Food and Drug Administration and the Robert Wood Johnson Foundation are also working with the company.
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Henry Timms, who helped spur the growth of online giving as the founder of Giving Tuesday, says the sharing of information for good is only going to become more popular. He calls it “data philanthropy,” noting, “All the people on Patients Like Me are funding a platform with their biological data.”
Jamie and Ben, both MIT-trained mechanical engineers, started the company with friend Jeff Cole as their brother, Stephen, neared the end of a battle with ALS. They considered founding a nonprofit but concluded that entering the health-care marketplace was the surest means to spark big change.
“We thought that was the only way to get to scale,” Ben says. “To truly impact a $3 trillion health economy, you really have to think of for-profit models.”
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Nonprofit hospitals and insurance companies are bathed in an altruistic glow, he adds, but “they are just as fiduciarily driven as we are, and we are just as mission-driven as they are.”
PatientsLikeMe earns revenue selling information to pharmaceutical and medical-device companies as well as insurance and medical-services ventures. That data, Ben says, means that health-care products can better reflect patient needs. Collectively, PatientsLikeMe members become a force in a market where the voice of the consumer is often filtered through caretakers and bureaucracy.
The company’s own research team has published dozens of studies — many on how best to focus care on the patient experience but others that examine the effectiveness of a drug or treatment. These “observational” trials have limited value — they lack a control group and aren’t as rigorous as clinical trials — but one study debunked research suggesting lithium could slow the progress of ALS, a finding confirmed in a top medical journal.
Such results give members a sense of purpose, Ben says. “They want to know that what they’re going through means something. They don’t want their experience lost to the world.”
