Web content editor Ian Bolland spoke to Kinza Kasher, a 24-year-old who developed the Duet device – which helps MS patients with the challenges that come with talking and texting.
Where did the idea come from?
The idea came from conversations that I started having with the Multiple Sclerosis community. This includes people living with MS, their families or care partners, local support groups, in talking to the MS Society, MS Association and Foundation, and more. This research indicated both physical and invisible problems in MS. I chose to focus on the invisible symptoms of MS, which society is so quick to dismiss, seeing that these are out of sight and out of mind. My talks indicated finding a solution for wide gaps in communication and the helplessness families feel in living with their loved one suffering through MS. So I tried to answer the question: How might we empower people with MS and their care partners to manage MS symptoms better together by starting a conversation?
What makes it different from other MS treatments/devices used by MS patients?
People with MS suffer from fatigue, brain fog, mood swings, severe pain, depression and anxiety, cognitive overloads. They feel like they are a burden every time they pick up the phone to call someone for help. They need something subtle to communicate how they are doing. The extra steps needed to call or text someone and explain in many words, to many people, that they need help is just another barrier in communication. Duet is easy to use, a high-touch technology solution and user-friendly. It uses changing colours of an eight-sided device to communicate programmed messages. Each message is represented by a different colour based on what the patient feels every colour means to them.
These messages/colours are changeable at any time and are different for every MS patient. Its innovative, personalised to every MS patient. It makes use of IOT software capabilities and data analysis to track the MS journey of a patient overtime, highlighting times of need or times of joy for the MS patient. The app raises awareness of MS symptoms for the patient’s family with step-by-step tips, providing help in managing them. The app also is a place where the care partners and the patient discuss care updates and needs in one place. There are features which promote sharing tasks related to care management amongst family members so no one person in the family feels overburdened.
Unlike other apps which only last for an average of two or three months on a patient’s phone for requiring too much cognitive input or not being inclusive of the rest of the family as part of the MS patient’s journey, Duet is designed to be a system of a physical device and a connected app to do just that and more. Easy-to-use and comprehensive, Duet sets out to help in the emotional journey faced by MS patients and their families on an everyday level – outside of the doctors’ office and in the comfort of their own homes and lives.
What are the future plans for Duet?
My goal is to make my product come to life so that MS patients and their families benefit from it like I wish my family would have had something to use like this. After the Lyfebulb-Celgene 2019 Innovation Challenge win, and the endorsement by thought leaders in the MS space, I am now actively looking for the right home for Duet which would allow me to focus on its design and continued development. My dream for Duet is to become a valuable resource to MS patients and their caregivers in the near future. On that end, I am evaluating my options carefully and will decide in due time, which partner would be best for those reasons.
Are there any other devices/innovations in the pipeline?
I am a user experience researcher and designer, so a big part of my job is to always be talking to communities of people who might be facing a problem in their lives and finding a space where smart design can make a difference. These explorations, in and outside of my day-to-day job, is always a place where more innovations, low- or high-tech, are developing.
Anything else to add?
I worked on Duet to shorten communication gaps between people with MS and their families. This is an important ‘side-effect’ of the auto-immune disease which is often overshadowed by the overwhelming physical effects of the disease. In my conversations with patients and families and listening to MS thought leaders confirms the core of my undertaking, which is centered around the belief that emotional well-being in everyday lives of MS patients is directly correlated to the success of their disease journey long-term. My aim is to work hard in collecting this data in hopes that more resources in healthcare are allocated in providing solutions for patients suffering from the invisible symptoms of MS and diseases like it, so that affects like depression, anxiety, brain fog and more are recognised, accepted and treated normal by larger society.
