We need your help to develop and plan research!
July 18th, 2023
We need your help to develop and plan research!
MDI strives to support and fund quality research into neuromuscular conditions. However, when planning research, the expertise of people with lived experience of the condition is sometimes missing. It is important that this lived experience is combined with the expertise of researchers. This partnership can enhance the quality and relevance of research, ensuring that it becomes more meaningful and acceptable to the very people it is intended to benefit.
Patient and Public Involvement
The partnership between researchers and people with conditions is formally called Participant and Public Involvement (PPI). It is a two-way relationship between members of the public partnering with researchers to help decide what research is done and how it is done. Examples of PPI include developing the research question, co-designing participant information leaflets, reviewing survey questions.
Who are PPI contributors?
PPI contributors are us and people all around us, such as a person on the bus or the neighbour next door. PPI contributors wear many hats; for example, they may have lived experience of a condition or be a carer, parent, employee, student, or a brother or sister of someone who has a neuromuscular condition. People are bringing all their expertise to the table, not just their experience of the topic been researched.
MDI advisory PPI panel
MDI is committed to bringing the voice of our community into the development and planning of research that is of relevance to the community. To ensure the unique insights of people with neuromuscular conditions are included in research projects from the earliest stages, MDI want to set up a PPI advisory group of people with lived experience of neuromuscular conditions. Members of the PPI advisory group will advise on various research activities that are supported by MDI.
What to do next
We are currently looking for individuals to be part of a joint research project that is been funded by the Health Research Board. The deadline for this expression of interest is 31st August 2023. If this interests you, please contact Dympna Mulroy (MDI Research Officer) who can answer any questions you may have and provide more information on what is involved.
Contact details:
Email: mdiresearch@mdi.ie
Phone: 086 6066109
Categories: Research
