Strengthening patient and public involvement in digital health innovation: reflective analysis of the development and real-world testing of the MyRA application.

BACKGROUND

To ensure that digital health applications reflect real-world needs and preferences, meaningful public and patient involvement is essential throughout the design process. However, existing patient and public involvement frameworks often fall short in guiding the fast-paced, iterative nature of digital health innovations. This study aimed to examine how patient and public involvement was embedded in the development and real-world testing of MyRA, a web-based self-monitoring application designed for and with people with rheumatoid arthritis, and explored the impact of this involvement.

METHODS

We used a multimethod, qualitative approach with retrospective analysis of multiple data sources. Documents from focus groups and co-creation sessions were used to examine the timing, form, and influence of patient and public involvement on design. A post-study questionnaire captured real-world experiences with MyRA. Steering group meeting notes assessed alignment with European Alliance of Associations for Rheumatology (EULAR) recommendations for involvement of patient research partners in research. Reflective steering group meetings provided further insights. All findings were synthesised and triangulated using inductive and deductive analyses.

FINDINGS: Patient research partners and experts by experience were involved throughout the project and influenced key design decisions. The post-study questionnaire revealed both positive experiences and challenges, including varied engagement patterns and preferences for application features. Overall, involvement of patient research partners in the project aligned well with the EULAR recommendations, and collaboration was seen as valuable, although sometimes complex. These insights informed a set of practice-informed considerations for meaningful patient and public involvement in digital health research.

INTERPRETATION: Continuous patient and public involvement across application development phases can strengthen digital health innovation but requires broader user validation beyond a core group, managing different stakeholder perspectives and expectations, and ensuring clear structures for collaboration. The findings offer practical considerations to tailor patient and public involvement frameworks for use in iterative, fast-moving digital health contexts.

FUNDING: Health Holland.