Within the roadmap for Mobilise-D, Patient and Public Involvement and Engagement (PPIE) was highlighted as a critical aspect of the work of the consortium. PPIE activities bring patient and public representatives into the research process to help researchers better understand lived experiences, to highlight areas of importance, and to support them in sharing their results in a way that ensures more people can both access and understand them.

Patient and public representatives are often involved in research projects in three areas: involved in the design of the research, participating in research studies and engaging with information about research findings and progress (see figure below – Principles of PPIE).

Principles for PPIE within Mobilise-D.

Although it is well known that PPIE activities is a critical component of research, it is not always clear how this type of work is completed and the best way to structure it within various studies. Although this will change depending on individual research projects, it is important to document how PPIE work is undertaken so that PPIE representatives and researchers alike can learn from different experiences.

Within the context of Mobilise-D, when the consortium started in 2019, a number of discrete PPIE tasks were completed. For example, patient representatives provided feedback on study protocols and information leaflets, the study website was developed, Mobilise-D was presented at various conferences and to patient societies, and they supported changes to the protocol when the Covid-19 pandemic occurred. However, although these tasks were worthwhile and important, it was noticed that these tasks were occurring in reaction to study needs, rather than thinking ahead to what was important to patients and the public. Also, it was noted that Mobilise-D is a very complex project. The project has over five different research objectives, and is undertaking its work across over 30 different research partners and with 5 patient cohorts. This complexity requires us to consider PPIE at a much bigger level in order to make sure that we are truly embedding the patient and public voice in the work of the consortium and to correctly identify their needs and priorities.

As a result, it was recognised that PPIE needed to be restructured within the consortium and so we developed two groups to help us to complete this: 1) the PPIE Board and 2) the Patient and Public Advisory Group (PPAG).

PPIE Board

The PPIE Board was developed to provide oversight and guidance on the implementation of PPIE activities across the consortium. It consists of researchers from each of the work packages, both from clinical and technical backgrounds, and a representative from the PPAG. Members of the PPIE Board operationalise the PPIE activities and ensure that they take place in line with the consortium objectives.

PPAG

The PPAG consists of patient and public representatives from each of the clinical cohorts included in the Mobilise-D project. It was created to support the work of the PPIE Board by ensuring that the patient and public voice is embedded throughout the action plan and its activities. Specifically, this is done through identifying topics of importance, highlighting any concerns or areas to change in protocols, and supporting the interpretation and dissemination of findings.
The differences between the two groups is listed in the Table below. Although the PPIE Board and PPAG meet independently, there is cross-over in membership which supports continuity of messaging and planning and to ensure that there is a consistent contact point between PPAG members and the Mobilise-D consortium.While the PPAG advises on and supports the development of PPIE tasks, the PPIE Board operationalises them and ensures they align with consortium objectives. These two groups work collaboratively in a continuous feedback loop process to ensure that PPIE activities both align with the objectives of Mobilise-D and embed the patient and public voice in all aspects of task creation.
Domain PPIE Board PPAG
Aim of group To provide oversight and guidance on implementation of PPIE activities To support the work of the PPIE Board by ensuring that the patient and public voice is embedded throughout the action plan and its activities

 
Roles and responsibilities Establish the PPAG and integrate it into the governance structure of Mobilise-D Identify and prioritise topics for research including meaningful mobility outcomes, how to adapt digital technology to patient needs and any concerns regarding technology
  Contribute to annual PPIE report Co-design and comment on research plans, protocols and materials
  Develop a detailed PPIE action plan aligned to the PPIE framework and update it periodically Involvement in interpreting research findings based on lived experience
  Ensure the action plan is implemented according to timelines Disseminating research results by co-designing engagement strategies
  Provide updates to the Mobilise-D Project Executive

 

 Support the assessment of PPIE impact

 
Membership Open to Mobilise-D researchers and a representative member of the PPAG Open to older adults with or without PD, MS, COPD, PFF and those indirectly affected by these conditions
  Clinical, academic, and industry representatives Patients or members of the public with or without previous PPIE experience
  Chair and co-chair from both academic and EFPIA partners, the PPIE implementation lead, representatives from the two clinical studies, from data management, regulatory experts and dissemination

 

 Invitations or one-off meetings can be arranged to other members of the public involved with Mobilise-D, or other organisations and representatives

 
Meetings Initially every 2 weeks Approximately 4 times a year
  Meetings occur online Meetings occur online
  Progressed to bi-monthly once operational All discussion materials sent in advance

 
Communication Range of communication tools and methods including email, remote meetings, sharing platforms and face-to-face meetings (if feasible) Range of communication tools and methods including email, remote meetings, sharing platforms and face-to-face meetings (if feasible)
Following the development of the PPIE structures, it was important to ensure that the two groups were working collectively towards a common goal. A PPIE action plan (Figure – action plan) was developed by the two groups as a way to ensure that PPIE tasks mapped to the various consortium objectives, covered a range of different topics and allowed the PPAG and the PPIE Board to plan ahead what activities are needed and when. These PPIE structures along with the action plan, supported the establishment of working groups for some of the key topics of interest. Specifically, researchers in the consortium, and members of the PPAG were invited to identify which topics they wished to get involved in and sub-groups were developed to ensure that targeted activity towards these key areas could take place. These sub-groups were established to conduct PPIE activities in the following areas: 1) data sharing, 2) trial guidelines around digital inclusivity, 3) the importance of mobility, 4) data visualisation and 5) dissemination. These topics now act as the agenda points for future PPIE Board and PPAG meetings, whereby updates are provided on each topic by those involved in each sub-group.