Patient and Public Involvement (PPI) plays a vital role in making digital health solutions more effective and user-friendly. The “More Stamina” project, which focused on designing an mHealth app for fatigue management in individuals with Multiple Sclerosis (MS), highlights how PPI can guide research. The project reveals insights into the roles patients can take, challenges in implementation, and strategies to ensure meaningful collaboration.
What was the context of the study?
Including people with MS in designing health apps ensures the tools meet their needs. There is an approach, called Patient and Public Involvement (PPI), which goes beyond just asking for feedback by making patients active partners in the research process. The “More Stamina” project used PPI to help develop an app for managing MS-related fatigue.
What did we do?
We collaborated with MS patients in various roles, such as advisors and design partners. They helped shape the app by sharing their experiences, reviewing materials, and providing feedback during workshops and meetings. To make the process accessible, we adapted session lengths, ensured meeting spaces were comfortable, and used clear, non-technical language.
What did we find?
Patients contributed valuable ideas that improved the app’s design and usability. Challenges included unclear roles, technical jargon, and balancing workloads to avoid fatigue. Clear communication and mutual respect were key to overcoming these issues and creating a positive collaboration.
Why is this important?
When patients are actively involved, health apps are more likely to succeed. This approach empowers users and ensures that digital tools truly meet their needs, paving the way for better health outcomes.
Reference
Yrttiaho T, Isomursu M, Giunti G. Experiences Using Patient and Public Involvement in Digital Health Research for Multiple Sclerosis. Stud Health Technol Inform. 2022 May 25;294:735-739. https://doi.org/10.3233/SHTI220574. PMID: 35612194.