Greater Manchester Multiple Sclerosis Information Network (GMMSIN)

• Research type

  Research Study

• Full title

  Greater Manchester Multiple Sclerosis Information Network (GMMSIN)

• IRAS ID

  348013

• Contact name

  Alison Brettle

• Contact email

  A.Brettle@salford.ac.uk

• Sponsor organisation

  University Of Salford

• Duration of Study in the UK

  1 years, 4 months, 1 days

• Research summary

  Multiple Sclerosis (MS) is a chronic autoimmune disease that affects the central nervous system, specifically the brain and spinal cord. Research suggests that social media can be used in long term conditions to exchange information and trigger positive outcomes such as improved self-management. Using our experience of similar work with other health conditions, the researchers have co-created a locally-tailored multi-platform social media support and information network for newly-diagnosed People Living with Multiple Sclerosis (PLwMS) in Greater Manchester. This network, named the Greater Manchester MS Information Network (GMMSIN), was designed through consultation and co-creation with both PLwMS and MS Healthcare Professionals (HCPs). GMMSIN consists of a hub website, secret Facebook community group and public content shared on YouTube, Instagram and TikTok. The network will be used to extend delivery of patient education by Manchester Centre for Clinical Neurosciences, who manage MS care in Greater Manchester, as an adjunct to clinical care for education, information and support. Participation or non-participation will have no impact on routine clinical care.

  This study will implement and evaluate GMMSIN. We hypothesise that engagement with GMMSIN and interaction between newly diagnosed PLwMS and HCPs will:
  1) increase self-management 2) satisfy information needs 3) improve awareness and understanding of health.
  A 12-month longitudinal evaluation will investigate these hypotheses using

  multiple methods including questionnaires to measure changes in self-management and social connectivity; digital methods to understand the activity and interactions in the network, and semi-structured interviews. It is anticipated that information provided and shared on the network may create social bonds, improve PLwMS understanding and awareness about their health and well-being and, by being better informed, PLwMS will gain coping mechanisms, make informed choices and establish realistic goals to help them live with their condition. Investigating impact of the network on HCPs will inform service utilisation and future commissioning.

• REC name

  HSC REC A

• REC reference

  24/NI/0129

• Date of REC Opinion

  8 Nov 2024

• REC opinion

  Further Information Favourable Opinion