Can you remember the last time you had a headache? How about the last time you ate something that bothered your stomach? Chances are these events are hard to recall, because our brains aren’t wired to retain small, subtle details over time.
But what if remembering these changes could make a difference in your health? This is what life is like for people living with multiple sclerosis (MS), a condition that usually leads to some level of disability. MS symptoms tend to vary, and people living with MS can typically recall some of their more obvious symptoms like trouble seeing or walking. Recalling more subtle changes, however, like problems thinking or speaking, can often be difficult. Yet, the subtle symptoms are equally important as they can signal new signs of disease progression.
“I generally see my patients once or twice a year, and while we have ‘gold standard’ in-office tests to evaluate for new disease activity, it is hard to capture all of the important fluctuations in their symptoms that occur between visits,” said Dr. Jennifer Graves, Associate Professor of Neurosciences and Director of Neuroimmunology Research at University of California, San Diego and Adjunct Professor at University of California, San Francisco. “Because MS symptoms vary day-by-day, we’ve known for quite some time that people’s experience outside of the doctor’s office may hold the key to better understanding and managing the disease.”
Now, the emergence of “Big Data” and wearable healthcare technology is making this a possibility. Just like we use smartphone technology to track things like steps, calories and hours of sleep, a new study is using it to understand the effects of MS on mental and physical functioning in a real-world setting, enabling researchers to see “big picture” trends in the data that could help us one day better understand the disease and how it may lead to disability over time.
The study, called FLOODLIGHT Open, is being led by San Francisco-based biotech medicine manufacturer Genentech. The study uses a proprietary mobile technology delivered through a smartphone app to track a person’s ability to perform simple tasks over the 365 days in a year that someone lives with MS, versus the two or three days they see their neurologist.
The FLOODLIGHT app is designed to collect a continuous stream of data all year long. People are asked to complete a short series of tests in the app that are based on traditional clinical assessments they undergo at their doctor appointments, like the “25-foot walk” for walking ability and a “9-hole peg test” to assess dexterity. The app also uses the smartphone to passively monitor walking ability and mobility throughout the day, without the person having to do much at all.
FLOODLIGHT Open is an open access study looking to enroll 10,000 patients in five years, which means anyone can join, and the anonymous “Big Data” collected through the study is freely available to help accelerate further research and collaboration.
“The availability of this level of data to the medical community is an important step in better characterizing the disability MS patients face in their real-world settings, and the results from this study could one day lead to better treatments and care plans for patients,” continued Dr. Graves, who was an investigator for a trial at the University of California, San Francisco that helped evaluate the FLOODLIGHT technology. “Fellow researchers and neurologists can access the anonymous data to conduct independent research, or for our own patients who’ve enrolled in the FLOODLIGHT study, we can see their test results – with their permission – and monitor their progress over time.”
Importantly, no information that could identify a person is entered into the FLOODLIGHT app, stored on the phone or in the database, so each person entering the study remains anonymous. People can choose to share their results with loved ones or their neurologists if they wish.
Annette, 48, was diagnosed with Relapsing Remitting MS in 2015, and she recently entered into the FLOODLIGHT study after hearing about it from her doctor. For Annette, the opportunity to be involved in this type of research is exciting. “Those of us living with MS want to do all that we can to help each other, so if participating in FLOODLIGHT Open helps doctors understand the disease and that turns into better care one day, I’m all for it. I also have elected to share my data with my doctor, so it gives me peace of mind to know that the app is tracking any changes in my health that I may have otherwise missed.”
To learn more and enroll, visit https://floodlightopen.com or download the FLOODLIGHT app on iTunes for iPhone or Google Play for Android.