MyApp4SEP

How did your project come about?

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In 2018, we began developing the MyApp4SEP application, a mobile app created by and for people living with multiple sclerosis (MS). The goal of this application is to support patients on multiple levels: providing information about the condition and health promotion in general, offering tools to manage certain symptoms, and strengthening collaboration with healthcare professionals.

The project's DNA—which we consider one of its greatest strengths—is the involvement of all its users, including patients and healthcare professionals. The mobile app was created based on a series of participatory workshops and continuous collaboration with a patient partner.

In 2023, we wanted to analyse MyApp4SEP in relation to the eight principles because we noticed alignments between these principles and the methodology of our project. Our project team, which includes two neuropsychologists and a patient partner, conducted a detailed analysis of the project for each principle to identify actions that could be implemented to further enrich it and align it with these principles.

Among the priority actions identified were working on the implementation of participatory governance and creating a governance framework that could be used by anyone working on a similar project to MyApp4SEP.

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What are your project objectives? 

Our project has 3 key objectives: 

1. To facilitate the establishment of participatory governance, involving patients, healthcare professionals, and all stakeholders associated with supporting people living with MS.
2. To implement a governance structure that is transparent and clear, where everyone knows their roles and responsibilities. The goal is to include the most relevant people and organizations in the governance to advance the project and ensure its sustainability.
3. To support other projects with similar challenges by creating a tool dedicated to participatory governance.

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Why is your project important?

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Governance is essential to ensure the sustainability of a project and to keep it moving in the right direction. Until now, governance has been very informal, although we have maintained collaboration with a patient partner. It is now time to "professionalize" the project and involve stakeholders who can contribute their expertise and vision to the project.

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How are you proceeding?

We are proceeding through four participatory co-creation workshops to develop the governance structure (co-creation is embedded in the project's DNA). As the project progresses and the governance structure matures, additional participants are involved to advance the discussion and make governance tangible and actionable.

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What challenges have you faced?

Our main challenge is that participatory governance is not a topic that neuropsychologists typically work with. It required training to fully understand the subject and the key questions to address when setting up participatory governance. Similarly, participants in the co-creation workshops needed to develop a shared understanding of the exercise. It was important to communicate to participants: we sense that you could bring great value to the governance in the long term, but for now, we are still co-creating it together with you.

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What lessons have you learned from this process?

It is crucial to have guidance, even when using a tool, because these topics require individuals with expertise in creating and managing group dynamics. Governance should include individuals who may be "external" to the project itself but who have knowledge of operational models, such as those based on a start-up approach. Project managers must have sufficient time dedicated to this effort to ensure progress. Alternatively, hiring someone specifically for this role should be considered.

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