PPI Ignite network
Embedded Patient Researcher in the COB-MS study
COB-MS is a feasibility study, meaning we are trying to learn whether the treatment is a useful one for people with multiple sclerosis (MS) and what we should change before running a larger study. The COB-MS study began in 2019. Throughout the lifetime of the project, we have had input from people with MS, MS Society, and occupational therapists. This PPI input has been invaluable and has meant that the work that we have done to date has had a greater impact.
The treatment (or intervention) is focused on helping people with MS who might have cognitive difficulties (problems with memory, attention etc) manage well in their daily lives. The COB-MS program consists of eight sessions, with a mixture of individual and group sessions, all now conducted online due to COVID-19. The focus of the program it to provide a holistic cognitive rehabilitative therapy to people with MS to help people participate more effectively in their day-to-day lives, which may otherwise be hindered by their cognitive difficulties.
How we work
The COB-MS research team currently consists of four members, including Dr Sinéad Hynes (primary investigator), Dr Christopher Dwyer (project manager), Ms Fionnuala Rodgers (research assistant) and Mr Robert Joyce (embedded patient researcher). The research team is further supported by a Patient Advisory Panel, as well as PPI participation within our Trial Steering Committee, Trial Management Group and among collaborators.
Embedded Patient Researcher
Mr. Robert Joyce is employed as a part-time assistant researcher on the COB-MS programme. He has Secondary Progressive Multiple Sclerosis, as well as other comorbidities. He is the first person to be employed by NUI Galway for this type of role. He is a member of the Trial Management Group and is involved at every meeting of the trial, contributing his 28 years of lived experience with the illness.
Patient Advisory Panel
There were five people on the patient advisory panel. One person has passed away in the last few months. We acknowledge the important contributions that she made to the COB-MS study and our thoughts continue to be with her family.
The panel has been consulted to provide detailed answers regarding lived-experience queries that have been of great importance for developing methodological solution strategies. The honest feedback that we have received from the group have allowed us to reduce the number of outcome measures we were using, reshooting a video to make it more engaging and accessible, and many other examples. The panel has also been of great help with respect to interpreting data regarding eligibility criteria, participation decline and attrition.
Trial Steering Committee
The COB-MS Trial Steering Committee includes two PPI members, who contribute to the overall oversight of the trial. A PPI pack was created for these PPI members to help with this membership.
Trial Management Group
Mr Joyce is an active member of the COB-MS Trial Management Group. On several occasions during the project, his experience has proven beneficial to the trial, particularly with respect to the evaluation of methodological materials to be provided to the study’s participants.
Aidan Larkin is the representative of the society and was involved in the initial grant proposal, interview panel for the selection of the Assistant Researcher with experience of MS and is on the Trial Management Group. The team also contribute regularly to the MS Ireland eZine and have a close relationship with Aoife Kirwan, Research and Advocacy Officer. The involvement and help provided from MS Ireland has been key to the success to date of the COB-MS trial.
From a PPI perspective, to date, our PPI team has contributed in a number of ways, including:
- Scripting and recording videos for both participants and occupational therapists delivering the program.
- Developing a Participant Information Sheet that will be used as part of a sub-study (SWAT) to assess whether a patient-designed information sheet works better than a researcher-designed one.
- Reducing and selecting outcome measures used in the trial.
- Helping train occupational therapists and research assistants on the needs of the patient.
- Developing a “Top tips” for occupational therapists who are delivering groups with people with MS.
- Presenting 5 Positive Outcomes of PPI at Public Health and Health Services Research Alliance Meeting.
- Advising on best locations to recruit participants and how to access some more difficult to recruit areas.
- Being actively involved in the recruitment of participants with MS, including interviews with national and local print media and radio.
- Supporting development of the COB-MS participant manual.
- Contacting participants regrading delivery method change to online from face-to-face, in light of COVID-19.
- Developing a bi-monthly COB-MS Newsletter for program participants.
- Providing support with respect to interpreting qualitative data from program participants.
- Developing non-traditional means of dissemination to lay communities.
- Interviewing participants who completed the program with respect to its feasibility and acceptability, as well as their experience of the program.
- Published an Open Letter in HRB Open about reflections of PPI to promote PPI to researchers and encourage others to get involved in PPI.
Name: Sinead Hynes