Life with MS

Dr. Darin Okuda is an innovator in the field of MS treatment. In fact, he serves as director of Neuroinnovation at UT Southwestern, as well as director of the Multiple Sclerosis and Neuroimmunology Imaging Program, and deputy director of the Multiple Sclerosis Program and Clinical Center for Multiple Sclerosis. He recently spoke with MS Focus about a new app for people with MS that he developed, MS Relapse Tool.
   
MS Focus: One of the most common questions we hear at MS Focus is “How do I know if I’m having an MS relapse?” Is this a question that your newest app “MS Relapse Tool” is designed to address?
 
Dr. Okuda: The MS Relapse Tool is a resource that was developed that enables patients to assess whether their experience is consistent with what many MS experts would define as a clinical relapse. After inputting information, the application itself will give you a percentage of probability, or likelihood, that what you’re experiencing may be associated with a true relapse, or if your symptoms may be more in alignment with a pseudo-exacerbation.
 
MS Focus: Why is it important to distinguish between a relapse and a pseudo-exacerbation?
 
Dr. Okuda: One reason is, from a medical standpoint, it’s important that we recognize symptoms accurately. The reason for that is many patients receive steroids by prescription as a result of these attacks, and there are short- and long-term consequences from such exposures. Second, it’s always great to allow for a patient to be relieved when they are told that their current experience seems to be more typical for something that relates to a pseudo-exacerbation or false attack versus what many feel represents disease advancement when an exacerbation occurs.
 
MS Focus: Does the app track a patient’s history of relapses over time?
 
Dr. Okuda: The current version that’s available really is designed to store information within the Cloud, but it’s not necessarily designed to learn from patients over time. But know that there are variants that we are working on and other variants that exist to allow for the incorporation of long-term data that are entered by the users.
 
Another really exciting aspect of that app that I should mention is that it captures both passive and active data. Why is this important? Active data really represents information that is provided from a user, so do you have numbness in your arm, do you have weakness in your arm, or your leg or is your bladder not working right or are you not thinking well? These are active metrics. The passive metrics are the ones that are really exciting and ones that will represent the future of software tools designed for healthcare. That includes where you live, so it may actually track weather patterns within your given region and whether it’s a change in temperature change in barometric pressure or humidity. These things may be contributors to why certain patients may not be feeling well.
 
In other versions moving forward you’ll see that the accelerometers within the phones will also be leveraged so that we can tell if a person’s quality of movement is ideal or excellent, versus if they’re moving, but not in the way that they usually do. So you’ll see the incorporation of a lot of these other passive metrics in many of the healthcare applications moving forward and this is something that we have somewhat tapped into very early on in the design of this software platform.
 
MS Focus: These sound like really useful tools.
 
Dr. Okuda: They’re something! The one thing I will say for disclosure is that there is a small charge for the app, and the reason why there is a charge is that we wanted for patients to really value what they were downloading, rather than having people download but not use the resource. So in case people are wondering why there may be a charge, that’s the reason why – and we also use those funds to create different iterations to better the apps that we have. 
 
MS Focus: You mentioned earlier about information being stored in the Cloud – that of course will lead many people to think about privacy. What kind of privacy safeguards are there in the app?
 
Dr. Okuda: All of our data are housed with Amazon Web Services and they have one of the best security systems that exist on this planet, which is fantastic. The other safeguard that we did put into place with respect to the app is in regards to the password, so if a user forgets his or her password, the data that are stored within our database system gets wiped. The other aspect, too, is that we don’t necessarily have identifiers like name etc., within the data – so it’s really difficult to pair information that is being provided from patients to the specific identifiers like date of birth and a person’s name or their address.
 
MS Focus: That sounds very secure. So where can people access the app?
 
Dr. Okuda: The app can be accessed both in Google Play, as well as the App Store so if you have an Android device or an iPhone, the app can easily be downloaded within both platforms.