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.
Abstract
Background
walking is crucial for an active and healthy ageing, but the perspectives of individuals living with walking impairment are still poorly understood.
Objectives
to identify and ...synthesise evidence describing walking as experienced by adults living with mobility-impairing health conditions and to propose an empirical conceptual framework of walking experience.
Methods
we performed a systematic review and meta-ethnography of qualitative evidence, searching seven electronic databases for records that explored personal experiences of walking in individuals living with conditions of diverse aetiology. Conditions included Parkinson’s disease, multiple sclerosis, chronic obstructive pulmonary disease, hip fracture, heart failure, frailty and sarcopenia. Data were extracted, critically appraised using the NICE quality checklist and synthesised using standardised best practices.
Results
from 2,552 unique records, 117 were eligible. Walking experience was similar across conditions and described by seven themes: (i) becoming aware of the personal walking experience, (ii) the walking experience as a link between individuals’ activities and sense of self, (iii) the physical walking experience, (iv) the mental and emotional walking experience, (v) the social walking experience, (vi) the context of the walking experience and (vii) behavioural and attitudinal adaptations resulting from the walking experience. We propose a novel conceptual framework that visually represents the walking experience, informed by the interplay between these themes.
Conclusion
a multi-faceted and dynamic experience of walking was common across health conditions. Our conceptual framework of the walking experience provides a novel theoretical structure for patient-centred clinical practice, research and public health.
Abstract
Purpose
Walking is crucial for an active and healthy ageing, but it changes with age and in the presence of diverse health conditions, such as non-communicable diseases and injuries. So far, ...conceptual frameworks of walking have not included the impact of these conditions and individuals’ lived experiences on their walking. Thus, we aimed to identify and synthesize evidence describing the walking experience from the perspective of individuals living with highly prevalent walking-impairing conditions of diverse aetiology (i.e., Parkinson’s disease, multiple sclerosis, chronic obstructive pulmonary disease, heart failure, hip fracture, frailty and sarcopenia).
Methods
We conducted a systematic review and meta-ethnography of qualitative evidence, following appropriate guidance.
Results
Out of 2,552 unique records, 117 were deemed eligible for the meta-ethnographic synthesis. We identified seven common themes that explain the experience of walking: (1) becoming aware of the walking experience, (2) the walking experience as a link between individuals’ activities and sense of self, (3) the physical walking experience, (4) the mental and emotional walking experience, (5) the social walking experience, (6) the context of the walking experience, and (7) behavioral and attitudinal adaptations resulting from the walking experience.
Conclusion
We proposed a framework that describes the interplay between these themes, providing a conceptualization of walking that is grounded in the experiences of individuals recovering from a hip fracture or living with other walking-impairing health conditions, and that may be used to set priorities and improve patient centricity in clinical practice, research and public health initiatives.
Support/Funding Source
This work was supported by the Mobilise-D project that has received funding from the Innovative Medicines Initiative 2 Joint Undertaking (JU) under grant agreement No. 820820. This JU receives support from the European Union’s Horizon 2020 research and innovation programme and the European Federation of Pharmaceutical Industries and Associations (EFPIA).
