MyApp4SEP: Revolutionizing MS Care Through Connection and Innovation

What is MyApp4SEP?

MyApp4SEP is a mobile app designed specifically for people with multiple sclerosis, offering digital tools tailored to the needs of both patients and healthcare professionals. It includes various modules based on feedback from patients and clinicians, allowing users to manage health information and decide whether to share it with professionals. The app fosters proactive, patient-centered care by bridging gaps in rehabilitation services, helping users track symptoms and enabling professionals to monitor progress.

To improve patient-professional communication, the app allows patients to manage their health data and share it with professionals if they choose, addressing gaps in rehabilitation by enabling continuous monitoring between appointments. The goal is to enhance communication between patients and providers.

Development began in 2018 with funding from the Daniel de Coninck Fund. IntoTheWeb developed the app, while the IT department of CHU de Liège manages its technical aspects. Additional funding from the Roi Baudouin Foundation, Chronicopôle, and the Fondation Léon Frédéricq has supported the project’s growth.

Our mission was to establish a new standard in multiple sclerosis care. Initially focused on neuropsychology, we expanded our vision through discussions with stakeholders. We worked with the Wallonia e-health Living Lab (WeLL) to adopt a user-centered design, involving patients and professionals from the beginning. This approach, aligned with the Living Lab methodology, prioritizes user needs. Five workshops were held during the app’s design, leading to one patient becoming a patient-partner and joining the project team.

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The Link Between MyApp4SEP and the 8 CTPs

In 2023, we evaluated MyApp4SEP using the 8 Caring Technology Principles (8 CTPs). The project team, two neuropsychologists, and a patient partner performed an in-depth analysis of each principle to identify actions that would improve alignment. We used the principles as a checklist to assess our strengths and weaknesses, helping ensure that the technology is developed responsibly and sustainably while prioritizing key actions.

"The first principle, 'to ensure technology is user-centric,' is the foundation of our project."

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‍What the Screening Through the 8 CTPs Revealed:‍

The screening highlighted strong alignment with several key aspects, such as addressing user needs through co-creation processes and fostering autonomy by allowing patients to decide whether to share their data. Stakeholder involvement, particularly patients, was central to development. Health literacy was integrated through regular information sheets and advice shared among patients, with a focus on ensuring that information is accessible and understandable for all. Informed consent, which is revocable, and control over data sharing were also central to the app’s design.

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Challenges:

While the project is generally well-aligned with the principles, several areas for improvement were identified, including adapting interfaces for cognitive or physical challenges, improving interoperability with CHU and RSW for better data sharing, and training healthcare professionals and caregivers to use the app. We considered sharing the code to make the app accessible to other teams but encountered challenges with differing developer languages and hospital standards.

We also identified the need to include instructions for app use in consultations and create participatory governance with dedicated patient-partners to ensure diversity. While these issues were on our radar, they had not been explicitly prioritized. The screening process provided a comprehensive review of all aspects crucial to developing a responsible and sustainable technology, helping us identify next steps.

Establishing participatory governance became a key priority for sustaining the project, with a structured framework essential for long-term success. Ideally, the screening should have been done at the project’s start to align the team on goals and technology principles, avoiding blind spots and ensuring agreement on priorities.

Although the project started a few years ago, we do not regret conducting the screening now. Having expert guidance was invaluable as neuropsychologists and patient-partners aren’t accustomed to evaluating projects with such criteria. The facilitator helped us reflect on our current alignment and identify actions for improvement. The project is time-consuming and funding is challenging, especially since we want the app to remain free for patients. This is why we prioritized establishing participatory governance to ensure long-term support. We cannot carry the full responsibility alone for the next decade.

A sustainable structure and support system are essential, and finding the right collaborators has been key. Despite challenges, we’ve been fortunate to have motivated patients and professionals involved. Looking ahead, we envision these principles becoming a recognized guide in healthcare and technology, forming an integrated framework for all stakeholders involved in the development, use, and participatory governance of the app.

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