Over the past several weeks, I’ve been using an app called Floodlight to track my ability to live with my multiple sclerosis (MS). It measures things such as my balance, finger dexterity, walking speed, and cognitive ability. It even knows if I’m keeping myself shuttered in my apartment or if I’m getting out and around.
Floodlight does this by providing a series of short, fun activities that you can “play” on a smartphone. You use your fingers to squeeze a tomato as it quickly moves around the phone’s screen, or trace a series of dots to measure hand strength and precision. You’re asked to match symbols to measure your ability to process information. It even tracks your movements when the app is closed to see whether you’re a couch potato. According to Floodlight’s website, the app gathers information on activity to “understand how your health affects your life.”
Who sees this data?
You can see all of this data and compare it, day by day. You can also share it with your doctor. But to use the app, you need to agree to allow your data to be stored, anonymously, in an open-access database. Anyone can join the study, and researchers “will have open access to the complete dataset, opening up new fields of study and ways to collaborate.” The people running Floodlight hope 10,000 people with MS will use the app and contribute to the study.
Who’s behind Floodlight?
Floodlight is a creation of Genentech, the pharmaceutical company that makes the disease-modifying therapy Ocrevus (ocrelizumab). So, I wondered what the company gets out of this. My answer came, in response to an email, from Laura Julian, PhD, Genentech’s principal medical science director: “Our ambition is to understand more about the unique signature of multiple sclerosis through the development of novel digital tools and validated endpoints,” Dr. Julian wrote. “This will help people with MS and neurologists to have a greater understanding of the disease, allow better management of individual personal experience with MS, and has the potential to accelerate the optimization of patient care.”
“FLOODLIGHT Open is a novel study format,” Dr. Julian added. “Researchers can access the universe of data and insights to conduct independent, original research. Researchers can also access data from a cohort of specific patients with permission from each individual patient and provision of their unique identifying number.”
Is data sharing a good thing?
Floodlight isn’t the only app collecting this kind of data. Two years ago, I wrote about the elevateMS app. It’s similar to Floodlight and was created by Novartis, which makes the MS medications Extavia (interferon beta 1b), Gilenya (fingolimod), and Mayzent (siponimod). Three years ago, I wrote about a European study called RADAR-CNS that’s tracking some MS symptoms using a wearable device and an app. In both of those cases, the data is shared with researchers.
I’m OK with sharing information about my MS. I think that the benefits that this data may provide to those in the MS community outweigh any potential for misuse. In addition to using apps like these, I regularly participate in detailed online surveys about living with MS that are regularly published by the iConquerMS organization. I write an MS column, so my life with MS is an open book.
I’m sharing this new information in hopes that a large group of shared data might help a larger group of people with MS. What about you?
You’re invited to visit my personal blog at www.themswire.com.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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