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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 bring a whole new level of collaboration and interaction to primary and long-term patient care. John Moore, who leads this project, is a physician who ran into an incredibly frustrating problem during his residency. Whether it was HIV, glaucoma, diabetes, or some other disease, there were often very effective treatments that would prolong a patient’s life, and yet patient adherence to treatment for chronic diseases was 50 percent or less. “It didn’t matter how I worked and how hard I tried to really help patients understand what was going on with them and give them compelling reasons to make changes in their lives,” Moore says. “The way things were structured and the tools I had, I just couldn’t do it.”

Which is what brought him to the Media Lab. “I was compelled to leave clinical training and work on this aspect—to design technological tools that fundamentally change the way we can practice medicine.” For a very small pilot this summer at the Center for HIV/AIDS Care and Research at Boston Medical Center, Moore created a touch-screen interface that shows patients a picture of each medication they’re on and a timetable for which medication should be taken when. If the patient doesn’t like those times, she can just drag and drop one setting, and the program will automatically adjust the entire schedule. Moore also created a simulation that depicts the HIV virus attacking T cells when a medication is skipped and the body fighting the virus off when medications are taken on schedule.

The HIV work is built on what Moore calls CollaboRhythm, a software platform that enables doctors and patients to work together in real time or asynchronously, with patients checking or recording data about their health, or asking questions about treatment whenever they want, and doctors reviewing it when they have time. Moore stresses that patient communication with a doctor doesn’t have to be “live.” A personal message, left in a video clip, that simply says: “Keep up the good work,” can do wonders for patient motivation, he says. It’s still personal, but faster and far less costly than arranging for patient and doctor to be in the same place at the same time. You can see a video that shows the system in more detail here.

MediaLabNewMediaMedicineoverviewPublic health: How can society detect influenza and other pandemics earlier? Figuring that out is the goal of this effort, which is led by graduate student Clark Friefeld, who co-created HealthMap, a website that culls reports from news outlets and healthcare organizations around the world to map where diseases are breaking out. One product of the project is Outbreaks Near Me, an application for the iPhone and Android phones that enables people to report activity indicative of an outbreak, such as someone on a plane coughing and sneezing. Moss calls it, “participatory epidemiology.” No report means anything by itself, but taken as a whole the data might point to something important—far earlier than traditional reporting through healthcare organizations would. “The vision is that we will empower ordinary people with mobile phones and technologies to be part of this front line in detection of flus and pandemics,” Moss says.

Preventative care and wellness: This effort, formally called Social Health, started only about three months ago in partnership with another Media Lab group, Human Dynamics, run by Sandy Pentland. “How can people make better decisions and control their lives from an overall wellness point of view to prevent disease,” is how Moss describes the central question that the group seeks to answer.

Their work draws on some of the interface and mobile apps projects mentioned above, adapting them for preventative care to help people make better decisions about diet and exercise. Forget about alarms that remind you to exercise or calorie counters for your iPhone. Instead, think of a mobile device as an assistant that will know where you are, how many steps you are taking, the calories you are burning—and can give you some advice on whether more exercise might be needed on a given day. Moss also brainstorms about a kitchen avatar that monitors what food you eat and helps you eat healthier. Or a robot that acts as a fitness or diet coach (I mentioned earlier that he liked robots, and the lab previously built a prototype robotic weight-loss coach called Autom). Or a razor that samples your blood and beams data via Bluetooth for analysis, or smart toilets that sample your stool and urine. “It hurts to think about it, but it’s not going to be that long,” says Moss. “People are not going to be hung like a Christmas tree with sensors. Social health technology is going to be embedded in everyday life.”

Moss and Pentland are planning a pilot project to test some of these concepts. The Media Lab director says he can’t yet name names, but that a half-dozen sponsors—including a technology company, a retail distribution company, insurance firm, and a consumer products company—are helping fund the pilot, which will probably employ mobile phones and home sensors and involve collecting data from “real living situations.” The Harvard School of Public Health and the Mayo Clinic are also partners in the effort.

The principle that ties all these projects together is revolution, says Moss. There is a lot of work going on in industry and academia in what’s often termed Health 2.0, “and I think it’s all pretty lame,” he says.

“In the big picture, what I’m trying to do is create platforms and ideas at the Media Lab that will stimulate a whole new wave of research and innovation that goes beyond the wave that’s out there today. The industry, I think, has underestimated what people can do to control their health. I’m really passionate about having this group be a beacon and a shining light of innovation—and a catalyst—that’s going to change the game.”