Most afternoons, Stephanie Buxhoeveden takes a few moments to march back and forth, making at least five U-turns, stand at attention and pinch a digital tomato on her phone.
The unusual ritual is intended to help Buxhoeveden track an unpredictable neurological disorder that largely strikes young women: multiple sclerosis. She’s playing games in an app called Floodlight, which logs her activity and sends it to the servers of drugs giant Roche Holding AG.
“One of the frustrations of having MS is that it’s different from day to day,” said Buxhoeveden, 31, who is a paid consultant for Roche. Even if a doctor’s appointment falls on the one good day in a series of tough ones — which inevitably happens — with the app “you can track your symptoms over time,” she said.
The Swiss drugmaker has had success in the multiple sclerosis market with a new medicine called Ocrevus, which is on track to exceed $2 billion in sales this year and will probably lead the $23 billion global market for branded MS therapies by 2021, according to Bloomberg Intelligence. At the same time, Roche is trying to get 10,000 patients to start using Floodlight in an ambitious attempt to better understand the debilitating disease — but also to get patients to give companies a front seat to intimate details of their day-to-day lives.
There’s much to gain from being in a patient’s pocket every day. Pharmaceutical companies get direct access to their clients, and to a trove of data that they can hope to ultimately monetize. Rivals from Pfizer Inc. to Novartis AG are thinking along the same lines, with a range of apps for everything from quitting smoking to eye disease. Multiple sclerosis lends itself to this kind of exercise better than some because a smartphone’s sensors can objectively observe how patients move, which is one of the best ways to track the disease’s development.
Roche Looks to Lead in Multiple Sclerosis
Hot-selling drug Ocrevus will probably dominate the MS market by 2021
Doctors usually only see MS patients twice a year, making it difficult to pin down small changes as they occur, said Jennifer Graves, director of neuro-immunology research at the University of California, San Diego, who helped lead the pilot study for Roche’s app.
“For years, I’ve had some patients, particularly those who come from engineering fields, come to the office with Excel spreadsheets where they’ve tried to do this type of self-monitoring,” Graves said.
Floodlight intends to keep participants anonymous, identifying each user only by a unique number. Participants don’t need to be on Ocrevus or even disclose what medicine they’re taking. Once they start using the free app, they can share their results with their doctors, possibly improving their own care.
The resulting data are available to anyone on Floodlight’s website. The point is to help scientists and physicians around the world “complete a more holistic picture with the hope to one day help improve care,” the website says. The app can track users’ movements throughout the day, even when it’s not in use, something Roche describes as “passive monitoring.”
The project’s methods for keeping people anonymous raise some concerns about privacy. The company says it’s taking “every precaution” to ensure that Floodlight data stays anonymous.
Drugmakers are drawn to technology that gives them a rare opportunity to interact directly with patients. Roche’s chief executive officer points to data as the single biggest catalyst for change in the pharma industry in coming years.
“It’s an experiment,” CEO Severin Schwan said in a Sept. 13 interview. “The idea is to get access to real-world data, which then again results in better R&D. If this works well, we could try this in different diseases.”
Digital tools can help “identify patterns in what seems like chaos,” said Katherine Heller, an assistant professor of statistical science at Duke University, which started a similar open-to-all-comers multiple sclerosis app study last year. “That wasn’t possible until fairly recently. Smartphones give us this amazing capability with minimal intrusion into people’s lives.”
MS destroys the insulation that protects the nerves in the brain and spinal cord, disrupting signals. There is no cure, and patients, on average, have a slightly shorter life expectancy.