Patient and Public Involvement

INFANT researchers recognise that a Patient and Public Involvement (PPI) Strategy is essential to bring academic and patient communities together to support a portfolio of perinatal clinical research studies that provide insights from the viewpoint of both patient and researchers.

INFANT studies involve parental/participant consent of vulnerable populations often in emergency situations, a public patient involvement approach greatly benefits the planning and retention of these groups. As this research is centred on making pregnancy safer and improving health outcomes for mothers and babies a targeted PPI strategy is most appropriate. INFANT researchers are encouraged to identify all key stakeholder groups involved in their research studies as early as possible. Engaging with these stakeholders through INFANT’s existing networks and active advocacy groups provides rich targeted feedback from people with real-life experience.

Lay members are more focused on the practical aspects and outcomes of research and how it can affect patients and their careers. They raise practical questions about study design and are invaluable in focusing researchers on meaningful outcomes. Researchers in INFANT are identifying and including appropriate PPI representatives as members of project steering committees as early as possible in their projects.

Ongoing PPI at INFANT:

Cerebral Palsy Parent Advisory Group (CP-PAG)

The CP-PAG is a group of parents from across Ireland, with children who have a diagnosis of CP working with the INFANT Research Centre, University College Cork. This group share their experiences and help review and give feedback on research documents which may shape future research that matter to families and children with CP. 

For more information, email Dr Mary Anne Ryan: maryanne.ryan@ucc.ie  

National Young Person Advisory Group – Led by In4kids and Children Health Ireland 

The National Young Person’s Advisory Group (YPAG) is jointly coordinated by in4kids and Children’s Health Ireland (CHI) Clinical Research Centre. The YPAG provides support and guidance to researchers, clinicians, healthcare workers, and their teams with research project and clinical trial design and conduct – transforming children and young people from subjects of research to active research partners. Officially established in March 2025, the YPAG consists of 27 active members, young people aged 12-18 from across Ireland.

For more information, visit: in4kids – ypag  or email: in4kids@ucc.ie

ELEVATE PPI Panel

Established in August 2025, the ELEVATE Research Programme PPI Panel consists of parents/carers, patients and those with lived experience of Cerebral Palsy. Recruitment is ongoing.

For more information, email elevate@ucc.ie