Patient & Public Involvement

What is Clinical Research?

• Clinical research aims to improve the health and quality of life for individuals by developing better ways to detect, diagnose, treat, and prevent diseases.
• Research often includes clinical trials, which are studies that test how safe and how well new or existing medical treatments work. These treatments can include medicines, therapies, or medical devices, and the trials look at how they affect people’s health.

What is Patient and Public Involvement (PPI)?

• Patient and Public Involvement (PPI) refers to the active participation of patients, families, and the wider community with experience of using healthcare services in research. Rather than research being conducted on or for them, PPI ensures that they are involved with researchers throughout the process.
• This involvement can include helping to design and carry out studies, as well as supporting the sharing of research findings with the wider public. PPI ensures that the voices, experiences, and perspectives of people with lived experience are embedded in research from start to finish, making studies more relevant and meaningful.

Why Does Patient and Public Involvement (PPI) matter?

• Researchers and healthcare professionals have extensive knowledge of health conditions and treatments, but they may not have personal experience of living with these conditions. The lived experiences and perspectives of patients therefore play a crucial role in bridging gaps in understanding and providing insights that clinical knowledge alone cannot offer.
• Involvement from people with lived experience is essential to ensure that research focuses on what truly matters to those using health and care services. It helps make research more relevant to real-life needs, priorities, and concerns. By incorporating these perspectives, research projects can generate stronger evidence that leads to meaningful improvements in services, care delivery, and health outcomes, ultimately contributing to better healthcare practices overall.

Mandy Daly

“Patient and public involvement transforms research from theory into impact. By embedding lived experience from concept to dissemination, studies become more inclusive, practical, and trusted—ensuring outcomes reflect real needs, improve participation, and deliver meaningful benefits for patients, communities, and healthcare systems.”

Mandy is the parent of a preterm infant and the founder of the Irish Neonatal Health Alliance (INHA, www.inha.ie)—a collaborative, multi-stakeholder, and multi-disciplinary platform. She is also a EUPATI Fellow, Trainer and Editorial Board Member, with a strong focus on advocacy, education, and research.

Mandy has contributed extensively to neonatal and paediatric healthcare through her involvement in system reviews, clinical audits, registry development, health technology assessments, and the review of obstetric, neonatal, perinatal palliative care and bereavement guidelines. She has helped design and deliver educational curricula and ongoing training for a wide range of learners, including medical, nursing, pharmacy, allied health professionals, and patient experts.

She actively mentors PhD students and serves on the advisory boards of the PPI Ignite Network, and the National Office For Clinical Audit. Since 2012, she has been a board member of the NIDCAP Federation International, and she has collaborated on over 80 national and international research studies, including the development of several Core Outcome Sets.

Mandy also chaired a committee responsible for developing the European Standards of Care for Newborn Health, and acts as a public reviewer for the Irish Health Research Board and BMJ Open Pediatrics. She is a member of the National Office of Research Ethics Clinical Trials Committee, and a patient contributor for the European Medicines Agency (EMA), and a member of the Health Products Regulatory Authority of Ireland (HPRA) Patient Forum. Her work has been published in multiple peer-reviewed journals.

IPPOSI

IPPOSI, the Irish Platform for Patient Organisations, Science and Industry, is a patient-led organisation that works to ensure the patient voice and lived experience are at the heart of healthcare, health policy, research and innovation in Ireland.

They do this by offering tailored education, training and opportunities for knowledge sharing, helping people across all disease areas understand the health innovation and policy landscape. Through a supportive, peer-to-peer environment, they make it easier for individuals to build the confidence and skills needed to take part in Patient and Public Involvement (PPI) in research.

IPPOSI also connects people with projects and initiatives where patient and public input is needed, using their extensive collaborative network. This network includes universities and hospital sites across Ireland, the Health Service Executive (HSE), industry partners, regulatory bodies such as the Health Products Regulatory Authority (HPRA), and organisations like the National Centre for Pharmacoeconomics (NCPE) and the Health Information and Quality Authority (HIQA), as well as European partners.

To learn more, visit the IPPOSI website at www.ipposi.ie and sign up to their newsletter.

PPI Ignite Network

The PPI Ignite Network promotes excellence and inspires innovation in Patient and Public involvement (PPI) in health and social care research in Ireland.

Its goal is to help change how research is done, so it better reflects people’s needs and experiences, which in turn helps improve health and wellbeing for everyone.

To learn more about how you can get involved as a PPI contributor, visit the PPI Ignite Network website.

EUPATI Open Classroom

EUPATI (European Patients' Academy of Therapeutic Innovation) is a unique training provider specialising in patient education in research and development (R&D) of medicines and other health technologies.

The EUPATI Open Classroom provides:

• A personalised learning pathway on the entire medicines R&D process and other health technologies that is accessible to learners.
• Flexible e-learning at the learner's pace, order and from anywhere in the world.
• Learners can access content for free with the possibility of obtaining a course and module certificate for a fee.

Visit the EUPATI Open Classroom website for more information.