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MIT Media Lab Director Aims to Transform Healthcare—By Bringing Patients Front and Center

Xconomy Boston — 

An avalanche of new technology promises to transform healthcare. You’ve heard a lot about it: Electronic medical records. New ways to mine genomic data to match patients with the right medicines. Everything from iPhone apps and robots to help you exercise or take your meds. Not to mention relatively “old” advances like digital imaging and telemedicine video hookups that connect those in remote places with doctors.

All this and a lot more fits under the broad umbrella of healthcare IT—and in Frank Moss’s view all of it (except maybe the robot part) falls far short of the mark of what technology should do for healthcare. You can find illustrations of many of his ideas—and he’s got a lot of them—in a corner of the MIT Media Lab, where Moss has set up a doctor’s table next to a living room arrangement as part of a research group called New Media Medicine.

The group’s goal is to help incite a revolution in healthcare by bringing patients front and center in controlling their own health. “We’re literally looking to break the 500-year-old asymmetry that exists between the high priests of medicine—the clinicians and the physicians—and ordinary people,” is the way Moss puts it.

That’s Frank Moss. Catchy phrases, bold vision, shaking up the establishment. Which is funny in a way, because he is the establishment. Moss isn’t just some upstart researcher in MIT’s vaunted factory of the future. Since 2006, he’s been the lab’s director. But after a few management-only years, he started his own research effort to look at new ways technology could transform healthcare.

This was an intersection he knew well. Before joining the Media Lab, Moss co-founded Infinity Pharmaceuticals, a cancer-drug company formed around the idea of using technology to find radical new ways of discovering drugs. And before that, he ran Tivoli Systems, a computer systems management software company that merged with IBM. So Moss (his own PhD is in aeronautics and astronautics) has spent a lot of time on aspects of technology and health and medicine, which is largely why he decided to study the convergence of these fields. To learn more, I recently visited Moss (who’s an Xconomist) in the Media Lab’s new home, which is right next to its original building, on the corner of Ames and Amherst streets in Cambridge, MA. It turns out I was one of the first outsiders to visit the spectacular facility.

NewMediaMedicineMooreMossNew Media Medicine got going in 2008, after Moss got a call from George Demetri, a leading researcher at Dana Farber Cancer Institute in Boston. Demetri was working on LAM, a disease of the lungs, kidneys, and lymphatic system that primarily strikes women in their child-bearing years and for which there is no known cure. He was interested in using technology to create ways to speed up the hunt for drugs for LAM—in large part by involving the patients themselves in the effort. And he introduced Moss to Amy Farber, a Harvard Medical School physician and founder of the LAM Treatment Alliance who herself has been diagnosed with LAM.

From that seed, Moss’s group has since expanded to span four core areas:

Biomedical research: The direct result of the partnership with Demetri and the LAM Treatment Alliance, the idea is to help patients with rare diseases participate in the process of finding cures and treatments—what Moss and PhD student Ian Eslick, who heads the work, call “collective discovery.” As you might expect, patients often seem to know things about their own disease that doctors don’t. They try out non-prescribed treatments, experiment with diet and exercise programs, and find ways to share information amongst themselves.

Moss’s group wants to enlist and assist that energy through new computer interfaces, social media tools, and other technologies. Moss stresses that the goal is not to develop better ways for people to commiserate or exchange tips, but to help in accumulating valuable data that can inform treatments and drug discovery. Of traditional drug discovery, with trials, placebos, and such, he says, “In some senses it treats patients like lab rats. What we’re really trying to do is explore through radically new technology how we can unleash the power of patients with rare diseases, or any disease, to really transform the drug discovery process, speed it up, by taking down the barriers between patients and clinicians and drug and biotech companies.” In the scenario he envisions, “Patients use data to create hypotheses and reach conclusions. In other words, they become scientists.”

Primary care and chronic care transformation: The goal here, says Moss, is to … Next Page »

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