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Mobilizing Patient and Public Involvement in the Development of Real-World Digital Technology Solutions: Tutorial.

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Summary

Patient and Public Involvement and Engagement (PPIE) guidance is crucial for developing effective digital mobility tools in large research consortia. This paper details PPIE structures within Mobilise-D, offering lessons for future collaborative projects.

Keywords:
digital mobility measuresdigital mobility outcomespatient engagementpatient involvementpublic-private partnershipreal-world mobilityresearch consortium

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Area of Science:

  • Digital health
  • Patient and Public Involvement and Engagement (PPIE)
  • Musculoskeletal health

Background:

  • Meaningful patient and public involvement and engagement (PPIE) is vital for developing effective health interventions, yet guidance is scarce, especially for large, international research consortia.
  • Large consortia face challenges in capturing diverse patient needs for new digital tools, risking reduced effectiveness and utility.
  • Mobilise-D aims to create digital outcome measures for real-world walking in four patient cohorts, addressing the need for accurate, accepted, and clinically valuable mobility assessments.

Purpose of the Study:

  • To outline the development of patient and public involvement and engagement (PPIE) structures within the Mobilise-D research consortium.
  • To detail the implementation process, contributor experiences, lessons learned, and provide recommendations for establishing PPIE in similar large-scale projects.
  • To offer guidance for setting up effective PPIE structures that foster collaboration between researchers and patient representatives for digital mobility outcome development.

Main Methods:

  • Describing the establishment of patient and public involvement and engagement (PPIE) frameworks within a large, multi-country research consortium.
  • Documenting the practical steps taken to integrate PPIE activities throughout the project lifecycle.
  • Collecting and analyzing experiences and feedback from PPIE contributors to identify best practices and areas for improvement.

Main Results:

  • Successfully developed foundational patient and public involvement and engagement (PPIE) structures within the Mobilise-D consortium.
  • Gained insights into the experiences of PPIE contributors, highlighting the importance of clear communication and defined roles.
  • Identified key lessons learned and formulated recommendations for enhancing the efficiency and meaningfulness of PPIE in digital health research.

Conclusions:

  • Established PPIE structures provide a robust foundation for future collaborative PPIE tasks in large consortia.
  • Clear collaboration frameworks between researchers and patient representatives are essential for successful PPIE in developing digital mobility outcomes.
  • The Mobilise-D experience offers valuable guidance for other large research initiatives seeking to implement effective PPIE strategies.