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

Abstract

Although the value of patient and public involvement and engagement (PPIE) activities in the development of new interventions and tools is well known, little guidance exists on how to perform these activities in a meaningful way. This is particularly true within large research consortia that target multiple objectives, include multiple patient groups, and work across many countries. Without clear guidance, there is a risk that PPIE may not capture patient opinions and needs correctly, thereby reducing the usefulness and effectiveness of new tools. Mobilise-D is an example of a large research consortium that aims to develop new digital outcome measures for real-world walking in 4 patient cohorts. Mobility is an important indicator of physical health. As such, there is potential clinical value in being able to accurately measure a person’s mobility in their daily life environment to help researchers and clinicians better track changes and patterns in a person’s daily life and activities. To achieve this, there is a need to create new ways of measuring walking. Recent advancements in digital technology help researchers meet this need. However, before any new measure can be used, researchers, health care professionals, and regulators need to know that the digital method is accurate and both accepted by and produces meaningful outcomes for patients and clinicians. Therefore, this paper outlines how PPIE structures were developed in the Mobilise-D consortium, providing details about the steps taken to implement PPIE, the experiences PPIE contributors had within this process, the lessons learned from the experiences, and recommendations for others who may want to do similar work in the future. The work outlined in this paper provided the Mobilise-D consortium with a foundation from which future PPIE tasks can be created and managed with clearly defined collaboration between researchers and patient representatives across Europe. This paper provides guidance on the work required to set up PPIE structures within a large consortium to promote and support the creation of meaningful and efficient PPIE related to the development of digital mobility outcomes.

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“…The use of sensors allowing to measure several gait parameters, beyond step count, may enhance the precision of mobility evaluations, offering insights critical for personalized healthcare strategies and better understanding of mobility-related disease progression or fall prediction. Within Mobilise-D, patient and public involvement and engagement (PPIE) activities have been developed to ensure that the technology proposed will be inclusive, clinically relevant and responding to the needs of the included groups (56).…”

“…While studies of different durations have demonstrated that sustained adherence to smartphone-based assessments can be achieved by a majority of participants in a supervised research context, reports from naturalistic settings have shown varying patterns of app usage over a 12-week period, overall indicating that user engagement can significantly drop off as time progresses. In a broader market context, retention rates reveal that within 90 days, healthcare apps retain only 31% of their users, and this figure decreases further over the course of a year (55,56).…”

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“…We have extensive evidence of working alongside patients in the development of digital health technologies to monitor various conditions including knee replacement rehabilitation [17], heart failure self-management [20,35], and real-world digital mobility outcome measures [41]. We have engaged with patients across each of the domains of patient and public involvement (PPI) in our work (https://www.nihr.ac.uk/documents/briefing-notesfor-researchers-public-involvement-in-nhs-health-and-social-care-research/27371 [accessed on 15 December 2023]), mostly within the Mobilise-D consortium, a public-private partnership which has developed digital mobility outcome measures of real-world walking across multiple patient cohorts.…”

“…We have engaged with patients across each of the domains of patient and public involvement (PPI) in our work (https://www.nihr.ac.uk/documents/briefing-notesfor-researchers-public-involvement-in-nhs-health-and-social-care-research/27371 [accessed on 15 December 2023]), mostly within the Mobilise-D consortium, a public-private partnership which has developed digital mobility outcome measures of real-world walking across multiple patient cohorts. This has led to the identification of PPI recommendations [41], changes to protocols, public facing dissemination activities, and more (https://youtu.be/qTazIpSC4DU?si=WwKYSKY2xBu2J2pe [accessed on 10 January 2024]; https://youtu.be/hherCpNiKLw?si=01E5EwPM2ww-xmc_ [accessed on 1 June 2024]; https://youtu.be/3FwD9XZynHo?si=nHSkxjqQpQxGJDBp [accessed on 15 December 2023]; https://youtu.be/Y_rfqCROIDQ?si=pRI2Fq0O49Bm5B4M [accessed on 15 December 2023]; https://mobilise-d.eu/ppag-activities-and-contributions/ [accessed on 15 December 2023]). Engaging meaningfully in this user-centred design approach means that the solution might not eventually be the one that was originally envisaged, it might not be a net positive for all types of users, nor might it be simply a digitisation of the current care pathway.…”