The team of MND Researchers in the School of Medicine in Trinity College, Dublin, are looking for people to get involved in MND Research to help shape it into the future in Ireland.
What is Patient and Public Involvement (PPI)?
Patient and Public Involvement (PPI) aims to give a voice to those directly impacted by a medical condition and the general public, so they can have a say in how research about that condition is carried out. In 2023, under the leadership of Prof. Orla Hardiman, the MND research team in the School of Medicine, Trinity College Dublin, established the first Irish PPI advisory panel for MND research. This panel provides an opportunity for people diagnosed with MND, their family, friends, or caregivers, to help shape the MND research carried out in the School of Medicine.
PPI is different to being recruited as a research participant; it does not involve providing data for a study. Instead, PPI contributors actively collaborate with researchers throughout the whole research process. It is an opportunity to give your opinion and perspective to shape the MND research being conducted in the School of Medicine. This can range from being involved in designing a study, collecting research data, right through to when the research results are shared and published.
Why should I get involved?
- As someone living with MND or affected by MND, you have highly valuable knowledge about MND that only comes from the lived experience. This helps us to focus our research on what is important to those impacted by MND, ensuring it is valuable and relevant.
- As someone affected by MND you have a right to have a say in what research is done and how it is done.
- You can increase the impact of our research by helping us to highlight our most relevant findings, and you can help us to communicate the results of this research to increase its impact.
As of March 2026, the panel has 24 active members; 16 people living with MND and 8 family members or members of the public. There are various ways that PPI panel members can contribute. So far, the types of activities panel members have participated in are:
- Discussion of research study protocols: Researchers prepare protocols when planning a study to describe exactly how, when and where participants’ data would be collected. Feedback was gathered separately for two studies, one which involves at-home use of technologies for self-assessment of physical function and one involving focus groups to gather opinions to aid the design of a telerehabilitation platform. During online group meetings, aspects of the study designs were discussed. Study protocols were then amended based on panel input.
- Design of end of study interviews: PPI contributors provided feedback on the design of an end of study interview of research participants. They provided feedback on aspects such as the interview structure, duration, and wording of questions. This resulted in clearer wording, as well as an acceptable structure and duration of the interviews.
- Consultation on research procedures: Research often involves participants being actively involved where they have to complete a specific task and the researcher records and examines this task. PPI contributors have been involved in multiple projects where they have advised on the testing procedures, for example, advising on accessibility of the research location, the duration of the testing procedure, the task instructions provided, and the ease of use of devices used to collect data.
- Presentation of information about the panel: Due to the collaborative nature of engagement between researchers and PPI contributors, panel members have an important role in promoting the panel and have co-presented researchers at MND community events, and our annual PPI workshop.
How do I get involved?
If you have been diagnosed with MND or are a family member, friend, or caregiver of someone who has been, then you are eligible to join the panel. New members can join at any time. Contributors are not required to have any specific skillset, and do not need to have experience in research or medical/scientific knowledge to take part.
Since launching the panel in November 2023, we hold an annual information event for current panel members and researchers to meet and discuss about active research studies in Trinity, provide feedback on contributions made by panel members, and review how the panel operates.
MND researchers in Trinity College aim to host an additional annual event for potential new panel members interested in learning about PPI, the PPI panel or considering joining in the future. Attendance is free and open to anyone who would like to hear more about what PPI involves and how they could contribute.
If you would like to join the panel, receive an information leaflet or receive details about this information event, you can email Aisling at researchmnd@tcd.ie. The MND research team look forward to hearing from you.
