How has SMND-RAG contributed to MND research?

July 2019

The SMND-RAG group have provided valuable input into a number of local and national MND studies over the last few years. Below is an overview of a project that we have advised researchers or directly been involved in and the current outcomes from those studies.

Patient and public involvement (PPI): Led Dr Esther Hobson

Patient and public involvement (PPI) in motor neurone disease (MND) research was explored by interviewing members of the SMNDRAG and researchers who have worked with the group. The findings can make a valuable contribution to all aspects of research (eg the SMNDRAG ensured that research was more patient-focused, improved recruitment and improved the accessibility of the findings). Participating in PPI offered individuals psychological, intellectual and social benefits (e.g. positive impact on self-esteem, gaining knowledge of MND and treatments, social contact and comradeship).

There are several barriers to participating in PPI and in ensuring that PPI is effective and meaningful were identified (e.g. lack of awareness or understanding of PPI, physical and emotional challenges associated with MND and limited time to seek PPI). The SMNDRAG had overcome barriers to develop a successful PPI group. Enablers identified included having a collaborative partnership with the researchers, promoting the group, allowing flexible involvement, having good administrative support and capturing the breadth of experiences. These enablers were incorporated into our recommendations for organising and running PPI groups.