Multiple sclerosis is a disease that can effect every aspect of daily life. However, symptoms vary on a day to day basis and the lack of predictability makes the disease more difficult to study.
“MS destroys the insulation that protects the nerves in the brain and spinal cord, disrupting signals.”
Typically, multiple sclerosis patients only see their doctor twice a year. If they go on a day where they happen to be experiencing minimal symptoms, their doctor’s evaluation is going to be much different than if it were a very symptomatic day. While of course you can vocalize the type of symptoms you’ve been having, its a lot to have to remember, document, and disclose. Its not unusual for some data to get lost along the way.
Basically, there’s a gap of information between what patients are experiencing and what their doctors and researchers know about it.
Technology as a Solution
Realizing this problem, a few companies have come up with ways for multiple sclerosis patients to track their own symptoms while they’re not in the doctors office. This gives them a more cohesive and organized way to show their doctors what they’ve been experiencing.
For instance, Roche has developed an app called Floodlight where patients can play games which work to keep track of their symptoms. They’ve designed the games to be similar to the activities that doctor’s have patients do in the office to test how they’re doing. They’re simple tasks that help analyze how symptomatic a patient is at any given time.
Floodlight is still in its pilot trial, working to ensure that the results from their activities match up with standard measures for tracking MS progression.
Stephanie Buxhoeveden has been using the app for three months now. Its been able to show her that her symptoms tend to act up on days that are more hot and humid. She’s now able to modify her activity on days with that type of weather which helps to keep her symptoms at bay.
In addition to giving patients this type of information concerning their own symptoms, the app allows researchers and doctors to have access to the data. It not only can help determine how well a certain treatment is working, it can provide them more information with which to study the disease as a whole. In fact, anyone can see the data which is published anonymously on Floodlight’s website.
The issue of privacy
It all seems like a great idea until you think about privacy. Yes, names are removed from the data but age, height, weight, year of birth, and place of residence are still available. That’s still a good chunk of personal information and it wouldn’t be too far fetched for someone to figure out who a patient is within the not so huge population of people with MS.
That said, Roche says they’re doing everything in their power to ensure privacy and it can’t be denied that data sharing apps like this could have an incredible impact on research.
Looking toward the future
Biogen, Inc. has also developed a data sharing tool. It’s a digital journal app with a similar concept to Floodlight. The app is called Aby in the US and Cleo abroad. The hope is that as more individuals download apps like these we’ll be able to develop a better understanding of multiple sclerosis and ultimately find a better treatment for the disease.
However, patients should carefully consider the risks associated with privacy before downloading. There are a lot of potential benefits to sharing data like this, but remember- it’s your data, it’s your choice.
You can read more about apps like Floodlight and Aby here, how they’re funded, and the ways the data may be used.
