Piecing together Multiple Sclerosis
A single symptom doesn't tell much of a story. However, like an artist collecting and organizing fragments of glass to create a work of art, doctors and researchers gather symptoms, data, external factors and more to piece together diseases and craft better treatment options for patients.
Katherine Heller, Ph.D. and Lee Hartsell, M.D., M.P.H., have teamed up to develop MS Mosaic, an app that seeks to better understand multiple sclerosis through daily experiences. MS is an autoimmune disease that affects the central nervous system. About 2.5 million people worldwide have been diagnosed with the disease. With over 20 different symptoms, 15 disease modifiers; 80 different medications for symptom management; and over 100 external factors, such as genetics and environmental circumstances that can influence the disease’s behavior, this dynamic disease is hard to research.
“So many moving parts haven’t been effectively measured,” Hartsell said, “so there’s no sense of what’s causing what or why the disease is the way it is. We want to take the fragmented elements, pull them all together and create a comprehensive image of MS.”
Using the app, people with MS can record their symptoms in real-time. They complete a daily survey, noting their medications and changes in their symptoms from the previous day. Every week, patients are guided through performance tests, such as finger tapping, walking speed tests, and timed addition tests. At the end of the week, a report is pushed out to the users showing how their symptoms compare to the prior week and what their most changed symptoms have been. The report also contains links to sites with specific information about the symptoms the user has noted.
The app also generates provider reports to help patients prepare for their regular doctor’s visits. “Imagine trying to distill your experience with your disease in the five to ten minutes you have with your MS doctor – it’s hard!” Hartsell says. MS Mosaic allows patients to input date ranges to generate reports with talking points for their clinic visits, which allows providers to piece together a better picture the disease’s progression over a longer span of time, rather than just how the patient has felt recently. This allows providers to make better informed decisions about treatment options.
MS Mosaic is built to collect large amounts of data to improve communications and understanding about the disease. “We want to find interventions that are useful for patients with MS,” Katherine Heller said, “and collecting data aids to the decision-making components to determine drugs and other interventions that will make patients’ courses with the disease easier.”
But the information will only be as good as the data users input, so maintaining strong engagement is key. To help, they have built a community engagement piece into the app that brings together others with MS, clinicians, and researchers. “We are asking people what kinds of questions they hope to find answers to when they are using the app and determining the best way to answer them with the tools we have,” Hartsell said.
Hartsell and Heller are also looking to interface with game and fitness tracker app developers in the future to help add games into the app that keep users engaged but also relate to in-clinic tasks that are useful to their disease treatment.
By combining personalized data in easy-to-read formats, social networking, gaming, and individualized patient and provider reports, the team is confident app users will remain engaged and researchers will be able to gather more data than ever before to help piece together a clearer picture of MS.