Exploring patient and public involvement in motor neurone disease
Research type
Research Study
Full title
Exploring the experiences of those participating in Patient and Public involvement in motor neurone disease.
IRAS ID
202066
Contact name
Esther Hobson
Contact email
Sponsor organisation
Sheffield Teaching Hospitals NHS FT
Duration of Study in the UK
0 years, 5 months, 1 days
Research summary
Background\nPatient and Public Participant Involvement (PPI) involves consulting members of the public on way in which research is carried out. In the last few years this practise has increased. PPI might involve deciding which research should be prioritised, advising on how clinical studies are carried out, and sharing the findings of research with the public. At the Sheffield Institute for Translational Neurosciences the Sheffield Motor Neurone Disease Research Advisory Groupis first and only group to specialise in motor neurone disease and have been working with SITraN researchers for over five years. Members include patients, family members, carers and volunteers.\n\nMethods\nThis research aims to explore the experiences of those involved the Sheffield MND research advisory group, the challenges they face and the things that may help or stop people taking part. A successful project may be able to recommend ways to make this and other PPI groups more successful and help more people take part\n\nSemi-structured interviews with members of the Sheffield Motor Neurone Disease Research Advisory group along with staff, clinicians and scientists who have worked with the group will be conducted. Interviews will be either face-to-face, telephone, Skype or email interviews depending on the interviewee preference and can be alone or together with e.g. a carer. The researchers will also attend the Research Advisory Group as an impartial observer to observe the activities of the group. \n\nResults\nThematic analysis will be undertaken with triangulation between the different interviewees.\n\n\nNature of research\nThis research study is conducted by the SITraN clinical research team including a University of Sheffield Clinical Neurology MSc student, under the supervision of the other researchers.
REC name
South West - Central Bristol Research Ethics Committee
REC reference
16/SW/0096
Date of REC Opinion
11 Apr 2016
REC opinion
Further Information Favourable Opinion