This study examines the challenges of integrating Patient and Public Involvement (PPI) into the development of a digital health solution for Multiple Sclerosis (MS) using agile methods. By analyzing the case of the “More Stamina” project, the research identifies key obstacles, including participant selection, onboarding, task framing, communication, and reimbursement, and offers recommendations for enhancing PPI practices in digital health innovation.
What was the context of the study?
Involving patients and the public in designing health apps helps ensure the final product meets user needs. This is called Patient and Public Involvement (PPI). The “More Stamina” project, which developed a health app for people with MS, included patients in the design process. The goal was to learn what challenges come up when including patients in such projects.
What did we do?
We looked at how PPI worked in the “More Stamina” project. We analyzed notes, interviews, and team discussions to find what went well and what didn’t. The project included patients, researchers, and business developers working together to create the app.
What did we find?
Five main challenges appeared:
- Participant Selection: Limited networks and regulatory constraints on remuneration made recruitment difficult.
- Onboarding: Insufficient role clarity and training left patient participants underprepared.
- Task Framing: Aligning technical and non-technical tasks with patient expertise proved problematic.
- Communication: Information overload or gaps led to misaligned expectations and inefficiencies.
- Reimbursement Models: Compensating patients introduced transactional dynamics, impacting trust and collaboration.
Why is this important?
Understanding these challenges helps future health projects involve patients better. When done well, PPI can lead to apps and tools that work for patients and improve health outcomes.
Reference
Yrttiaho T, Giunti G, Isomursu M. Challenges Implementing Patient and Public Involvement in a Digital Health Agile Project Which Includes Research, Business and Software Development. Stud Health Technol Inform. 2024 Aug 22;316:310-314. https://doi.org/10.3233/SHTI240406. PMID: 39176735.