Patient Involvement and MS
Research type
Research Study
Full title
Exploring the impact of public and public involvement in the field of MS
IRAS ID
303908
Contact name
Heather Mah
Contact email
Sponsor organisation
Queen Mary University London
Duration of Study in the UK
1 years, 11 months, 26 days
Research summary
This project will evaluate patient and public involvement (PPI) initiatives for people living with multiple sclerosis (MS). Some of these initiatives are currently run by Barts MS including the MS Blog and Barts MS Advisory Group. This study aims to 1) explore people’s motivations experiences of engaging in PPI including patients and healthcare professionals, 2) identify barriers to why people may not engage in PPI, 3) identify solutions to how these barriers can be addressed, and 4) examine how these solutions can be applied to current policy and practice.
This study will recruit from four groups of participants: 1) MS blog readers, contributors, and non-contributors, 2) professional patients with MS, 3) PPI members from NHS MS services (Barts Health, Cardiff, Leeds, national MS charities: MS Society, shift.ms, MS Register), new and existing PPI group members through Barts MS affiliated projects (Barts MS Advisory Group, Globody Antibody, Pregnancy and MS) , and 4) MS healthcare professionals, researchers, and PPI leaders.
This will be a three-year study for a PhD research project. Qualitative surveys, semi-structured focus groups and interviews will be conducted with people living with MS and healthcare professionals.
Summary of Results
Patient and Public Involvement (PPI) has become an expectation in Multiple Sclerosis (MS) research. MS is a chronic neurological condition that can have unpredictable physical and cognitive symptoms. While PPI is often framed as a way to improve research quality and relevance, less attention has been given to how it is experienced by those taking part. This qualitative thesis explores how people with MS, researchers, and staff supporting PPI experience involvement practices in MS research.
This research combines a scoping review on the value of PPI in health research with interviews, focus groups, workshops, and observations. Data were analysed using reflexive thematic analysis and informed by social capital and social constructionism to understand how relationships, assumptions, and institutional contexts shape how lived experience is valued or constrained in research.
The findings show that participants faced epistemic barriers such as scientific language, assumptions about expertise, and power hierarchies. Institutional practices including meeting formats, academic spaces, inconsistent communication, and funding constraints further influenced participation. Participants occupied overlapping and unclear roles, positioned as in-betweenness due to organisational systems. These practices also risked being transactional and extractive, treating lived experience as commodities rather than a source of expertise. Living with MS introduced additional complexities including invisible symptoms that fluctuated and were varied. However, taking part enabled advisors to reconstruct their identities. An under-recognised aspect was the emotional and invisible labour involved for both advisors and researchers.
This study argues that involvement should not be solely about improving research but reconceptualised as a social practice influenced by power dynamics and institutional expectations that can create unequal access to resources and opportunities. It offers recommendations for MS research and PPI practice emphasising the importance of flexibility and accessibility, the different experiences and identities people bring, and recognising lived experience as skilled labour and providing opportunities for reflection and debrief.REC name
London - Riverside Research Ethics Committee
REC reference
21/PR/1745
Date of REC Opinion
25 Jan 2022
REC opinion
Further Information Favourable Opinion