MND Researchers in TCD Currently Seeking Interest for a Public and Patient Involvement Panel - Lesley Doyle Speech & Language Therapist (SLT).
The Academic Unit of Neurology in Trinity College Dublin (TCD) are offering an opportunity for anyone who has been diagnosed with MND or a family member/caregiver of someone who has to give their opinions and perspectives to help shape the MND research carried out by the unit. Public and Patient Involvement (PPI) gives a voice to people who are directly impacted by a medical condition, so they have a say in how research is carried out for that condition. The MND researchers in TCD are in the process of setting up the first ever MND PPI panel in Ireland.
Research involves many stages such as planning how a study will run, gathering data then analysing and sharing the results. PPI is different to being recruited to sign up as a participant in a research study in the data gathering stage; it does not involve following a protocol to provide data for a research study or recruiting participants to a study. With PPI, contributors are frequently involved in the planning stage to help identify research priorities and design studies in a way that is not too burdensome to potential participants and provides ways of measuring results that are meaningful to them. Sometimes PPI contributors are also involved in analysing the results, and often they help to share the research findings in a way that is accessible to the wider MND community. In this way, PPI creates more of a partnership between participants and researchers.
PPI contributions can take several formats, for example attending group meetings, trialling surveys to check that the meaning of the questions is clear, trying out technology, devices, or assessments, emailing feedback about the clarity of information leaflets, helping to write newsletter reports to share research findings with the MND community. This means that there will be many ways to contribute whether you prefer to do so through a conversation or find it easier to give written/typed answers when you have more time, perhaps if you have a communication difficulty. We plan to make as many meetings as possible virtual so they will be in the format of video calls rather than in-person to maximise accessibility for people who find it challenging or fatiguing to travel. If you are not confident with using technology for video calls, we will offer help with a practice run.
Right now, the MND researchers in TCD are gathering initial expressions of interest. If you have been diagnosed with MND, are a family member/caregiver for someone living with MND or a bereaved family member/caregiver, they would like to hear from you. There will be an initial information event to explain the areas of research where PPI involvement will be needed and to discuss how the PPI panel will operate. It is hoped that members would aim to commit to the panel for at least one year. However, the researchers fully understand the challenges of life with MND so you can opt out before then if needed and recruitment to the panel will be ongoing with new people continuing to join over time so if right now is not right for you, you could consider it again in the future.
If you would like to register your interest to receive further information about the panel, you can email Aisling at researchmnd@tcd.ie.
