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).
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).
|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)|