Mobilising patient and public involvement in the development of real-world digital technology solutions: tutorial from the Mobilise-D consortium (Preprint)

Abstract

Mobility is an important indicator of physical health. As such there is potential clinical value in being able to measure mobility accurately in a person’s home and daily life environment to help researchers and clinicians to better track changes and patterns in a person’s daily lives and activities. To do this, there is a need to create new ways of measuring walking. Recent advancements in digital technology are helping researchers to do this. However, before any new measure can be used, researchers, healthcare professionals and regulators need to know that the digital method is accurate and that it is both accepted and produces meaningful outcomes for the patients and clinicians. Researchers must therefore include patients, or members of patient organisations, in the development of such new tools in a process known as patient and public involvement and engagement (PPIE). Although the value and importance of PPIE activities is well-known, little guidance exists on how to do this 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, the risk is that PPIE does not capture patient opinions and needs correctly, thereby reducing the usefulness and effectiveness of new tools. Mobilise-D is an example of such a large research consortium, that is looking to develop new digital outcome measures for real-world walking in patients with Parkinson’s Disease, Multiple Sclerosis, Chronic Obstructive Pulmonary Disease, and Proximal Femoral Fracture. This paper outlines how PPIE structures were developed in this consortium, providing detail about how this happened, the steps taken to implement PPIE, the experiences PPIE contributors have had within this process, the lessons learned from it, and recommendations for others who may want to do similar work in the future. The work outlined within this paper has 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 around 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.