On Thursday 26 April 3pm – 5:30 we are holding an initial meeting to establish a new research advisory group for MS at the Sheffield Institute for Translational Neuroscience.
We hope to form an ongoing research advisory group of patients, carers and people with substantial experience of MS who come together to meet on a regular basis, hear from researchers about various different projects and who:
- help to shape our research programme
- want to learn more about medical research
- are happy to discuss their views and listen to others
- want to work with researchers and other people with MS
- review research applications
- improve the way we talk about research
The first meeting is planned as a taster session, and people who attend can decide if they would be willing to commit for instance to quarterly meetings, by joining the group formally and can help to decide how the group should best operate. MS researchers in Sheffield investigating different sorts of areas within MS are eager to start a conversation with MS patients about the relevance, feasibility and other aspects of their projects. We think it’s a real advantage to have ongoing meetings, as it provides:
- more peer-to-peer support through the group,
- we can identify any training needs and work to meet these,
- projects can of course stretch out and evolve and it would be great to be able to update the group and feedback the impact that the group’s help has had,
- we want to emulate the great success of co-designed research projects that have been identified as areas to prioritise for quality of life by a similar research advisory group in motor neuron disease, thanks to ongoing patient-researcher collaboration.