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.
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