The Online Support Platform for Facilitating Effective Communications between Facioscapulohumeral Muscular Dystrophy (FSHD) Patients and the Healthcare Network

Abstract

Facioscapulohumeral muscular dystrophy (FSHD) is one typical type of chronic Neuromuscular Dystrophy. This type of disease necessitates network care because it is complex and necessitates a network of diverse healthcare expertise to reduce the negative effects of the disease and rehabilitate the patient to live a more normal life. As a result, effective communication and collaboration among various healthcare members become an important part of the overall patient experience.
Based on the user research, it can be found that patients often encounter problems during their treatment, but they often cannot get proper help quickly due to the slow reply time of the healthcare professionals. Also, because of the difference in the know-how of the disease, the communication towards the patient is not summarized as one diagnosis and support session and in the end, they cannot get a complete answer from the healthcare team. Therefore, I want to design an online support platform to help FSHD patients get the right help in time during the treatment of their disease.
The final design is an online support platform that aims to help patients solve their problems during the treatment and facilitate effective communications between patients and the healthcare network. The core of this service platform is to introduce a personalized coach to bridge the gap between the two sides. The platform has two main functions, treatment, and chat, which can meet most of the needs of a patient during the treatment process. In the treatment session, patients can follow the exercise videos based on their treatment plan made by the healthcare professionals. After they complete one exercise, the platform enables users to make a self-evaluation of their performance. When patients feel negative about the training, they can quickly inform this situation to the coach and the healthcare team by using the share function. Then they will receive comments on their recordings from the healthcare professionals so that they know how to adjust their actions. The chat function allows the patient to quickly ask questions and express their need when they encounter problems with their personalized coach. The coach will help to filter the question and inform the related healthcare professionals to discuss it in a chat group when needed. When the discussion ends, patients can get a summarized answer from the coach.
Based on the usability test, it can be validated that the design can bring benefits to people. The two main features of the online platform (chat and treatment) were useful to the test subjects, and they expressed a willingness to use the platform if it will be developed in the future. However, there is still room for improvement. In the future, we can further think about enlarging the user group, such as involving more patients of other neuromuscular diseases and expanding the service, such as helping the customer to build their healthcare team to add more value to more people.