Designing Motivational Data for Males with Duchenne Muscular Dystrophy

Abstract

Duchenne muscular dystrophy (DMD) is a serious hereditary muscle disease that almost only occurs in boys and men and causes the muscles to become weaker over time. Given scientific research thus far, they are encouraged to obtain and maintain an active lifestyle. This may help delay the symptoms of the disease and help preserve their upper and lower extremity functionalities for a longer period.

Yumen Bionics, a Medtech startup, has developed a passive (motorless) exoskeleton that supports the males’ arm movements and collects data regarding the exact positions of both arms over time. As the exoskeleton is designed to especially benefit males aged 12-18, they will be considered as the target user group for this project. Since the exoskeleton has embedded sensors, Yumen Bionics yearned to investigate how they can give feedback to users and what type of feedback would motivate them to keep moving.

This project aimed to apply Research through Design and co-creative approaches in order to explore ways in which a motivating data interaction scenario can be designed. These approaches foster iterative prototyping efforts and involve potential end-users in the design process. Throughout the entirety of the project, the Self-Determination Theory (SDT), a theory of human motivation, was used as inspiration during design development and as an evaluation tool.

Since little was known about a males’ true motivations and behaviors behind interactions with healthcare services, the first phase of the project included a thorough user research cycle. One of the most prominent findings was that there is a disconnect between a male’s extrinsic and intrinsic motivations towards movements that are necessary for their health and wellbeing. It was hypothesized that Serious Games (digital games that can help facilitate physical activity) and/or Digital Twins (a digital representation of the user’s health status in real-time) may be an appropriate way of visualizing the data. The second phase focused on iteratively prototyping and testing these visualizations. This helped gain knowledge regarding users’ motivations and on design functionality, aesthetics, and practicalities.

Given gathered insights, the last phase in the project aimed to bridge all the learnings and design a mobile application that can be seen as a valuable addition to the exoskeleton. This app, also known as “Exo-Pal”, provides meaningful feedback to the user regarding their everyday movement and is perceived to motivate them to move an optimal amount. Through the use of daily goals (moving thirty minutes per day), reward systems (receiving daily and ‘special’ badges), evolving visualization content and storylines, and Digital Twin technology (that takes the form of a ‘Pal’), it can be predicted that these main features can help maintain a user’s interest in using the product. All in all, Exo-Pal may help encourage males with DMD to reflect on their progress (or lack thereof), allow them to be more proactive about their health and well-being, and increase their feelings of autonomy.