How many times have you been on your ride home from your neurologist appointment only to remember all the things you forgot to tell the doctor during the appointment? How many of you get home and write down those things that you forgot right away so you wouldn’t forget them again?
Don’t worry, you are not alone. I didn’t write them down either. Not only do most patients forget to write down appointment specific questions, but they also forget to track symptoms throughout the year. And most patients only see their neurologist once or twice in a given year.
Typically between appointments I usually develop a list of questions, MS related symptoms, or have had significant events that my neurologist needs to know about. Only I don’t track this information. Not only do I lose out on the opportunity to share this information with my neurologist, but my neurologist doesn’t get the full story of my disease progression.
What if there was a way to capture this information electronically? What if your neurologist could access this information as it was submitted? Mary Ann Picone, M.D. and the team at MS Connect have created an app to solve this problem.
Dr. Picone is a neurologist and MS specialist, who has been treating people living with MS for over twenty years. She is also the medical director of the MS Center at Holy Name Medical Center in Teaneck, NJ. Dr. Picone and I sat down to talk about MS Connect and how the application has the ability to improve appointments between MS patients and their neurologists.
Matt: Dr. Picone, thank you for joining me. How did your clinical experience at the MS Center, help you develop MS Connect?
Dr. Picone: I’ve formed a connection with my patients over the years I have been treating for MS. I’ve seen their struggles on a day to day basis. I see their progression through the disease stages. The problem is that in a 30 minute appointment, we can’t always get the whole picture. Maybe there are stressors that are affecting the patient like financial or transportation issues. Maybe the patient is having trouble with daily activities. A lot of times in 30 minutes some of that information may not come to the surface, but it is an important part of the overall picture.
Matt: As a patient, I can relate. Sometimes the Arizona heat, stress or other factors can cause flare ups. I never know if I should call my doctor or not.
Dr. Picone: This is one of the problems that MS Connect is trying to solve. With the app, the patient can report red flags right to their neurologist. This will help the patient’s care team track or identify relapses, potential relapse or pseudo exacerbations.
This is also an opportunity to educate the patient on the varying degrees of exacerbations. One of the goals is for the patients to improve their education and to know when something is off. The hope is that with education, the patient develops a better understanding of the disease process.
We are trying to use the app to increase the understanding of the disease for the patient. For example, how stress and emotional fatigue can impact their disease process. Or the importance of reporting falls.
Matt: Is the goal of MS Connect just to improve the MS patient experience?
Dr. Picone: Matt that is a great question. The goal of MS Connect is to see if we can develop standards for patient outcomes and quality of care. A common question that is raised by fellow neurologists is how can we really assess disease worsening?
With MS Connect, neurologists can get all information in one place. One of the toughest challenges in MS is how do you assess whether a patient is worsening. Comparison studies, MRIs do not give a completely picture.
Also, how do we track what is going on between visits? There would be a patient portal where the neurologist can receive patient reported red flags. MS Connect really connects the patient to the physician, which we hope, will lead to an improved quality of care for multiple sclerosis.
Matt: This sounds great, Dr. Picone!
Dr. Picone: I’m glad you’re excited Matt! We designed MS Connect with you and everyone else living with MS in mind. However, we need your help. We are launching an Indiegogo campaign to raise the funds to complete the application.
Matt: How can I help Dr. Picone? I think this application has the potential to change how MS is treated and streamline neurology appointments. Is there anything I can do?
Dr. Picone: We would love to have people visit the Indiegogo link to learn more and help us reach our goal. Click on the following link to read about the Indiegogo campaign: http://igg.me/at/msconnectapp
Matt: Thank you Dr. Picone for stopping by. I also want to thank you for all you do for people living with MS, like me. This is a great campaign and I am certainly going to do what I can to help.
Dr. Picone: Thank you so much for having me and for raising awareness for MS Connect.