April NUI Galway Conference Puts the Voice of Patient First in Healthcare Research

NUI Galway is holding the third annual conference that looks at Public and Patient Involvement (PPI) in healthcare research focusing on the theme, ‘Every Voice Matters’ this year. The event takes place on Wednesday, 25 April at the Institute for Lifecourse and Society.

A number of disease areas will be covered at the conference, including a particular focus on how mental health service users have contributed to the many different studies over the last twenty years and have become strong advocates for bringing about change in our mental health services. Dr Austin O’Carroll will talk about his experiences working as a GP with people living at the margins in inner-city Dublin, and another presentation will look at the use of video as a way of hearing the voice of marginalised people.

Professor Sean Dinneen, consultant endocrinologist and leader of the PPI Ignite @ NUI Galway programme, is currently drawing on the lived experience of a group of young adults with diabetes to help plan a major research study aimed at redesigning how diabetes care is delivered to young adults with diabetes.

Professor Sean Dineen from NUI Galway, says: “Involving patients in your research from the very start makes perfect sense as who knows better what matters most, what needs to be addressed, than the people living with a condition. The PPI Ignite @ NUI Galway programme aims to help both researchers and patients and the public to understand why Public and Patient Involvement matters, and aims to develop a research ethos where patients can become equal partners in the research process. Patients want to help make a difference, to bring about change and this programme will help bring it about.”

One of the participants at the conference, Wendy Costello, will describe her journey to getting involved in research. When Wendy’s daughter Niamh was three years old, she was diagnosed with juvenile idiopathic arthritis (JIA), a rare disease affecting over 1,000 children in Ireland. Wendy is a founding member of ICAN, a national support network for children with JIA and their families. Wendy says: “A parent at a recent ICAN meeting said that while doctors may have studied JIA they have not lived with it, and this is why parents and patients are needed as partners in research, our voice is a crucial piece of the puzzle.”

The PPI Ignite @ NUI Galway programme will be officially launched at the conference. Funded by the Health Research Board the programme aims to bring about a culture change in how healthcare research is conducted across the University by working in partnership with patients and the public at all stages of the research. The programme will provide training and support to both the public and researchers.

The conference is organised by the HRB Primary Care Clinical Trials Network Ireland, a collaborative group of researchers conducting clinical trials through general practice and primary care. Professor Andrew Murphy, Director of the Network at NUI Galway, said: “The public always offer unique, invaluable insights that help shape our research and we need to listen to them.”

The conference takes place in the Institute for Lifecourse and Society at NUI Galway on Wednesday 25 April from 10am-3.40pm.

Registration is essential and for more information, visit: https://primarycaretrials.ie/news/ or email info@primarycaretrials.ie or edel.murphy@nuigalway.ie and 091 495743. 

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