Patient and Public Involvement in Research (PPI)

Siobhán Whelan, Patient representative for NPEC shares her experience. 

Please click on this video to view her recent talk

Mandy Daly shares her experience of contributing as a patient representative with NPEC

I am a medical and disability underwriter and a parent of a preterm infant born in 2006. Since that time I have been advocating in the neonatal space and in 2013 I founded the collaborative multi-stakeholder platform, The Irish Neonatal Health Alliance (

 I have extensive experiential and sectoral knowledge and I specialise in the areas of Advocacy, Education and Research. My achievements in the field include effecting several neonatal and paediatric health system reviews, developing and delivering curricula and continued education to medical, nursing and allied health professional students, mentoring PhD students, serving on the parent advisory board of the European Foundation For The Care Of Newborn Infants and the NIDCAP Federation International Board since 2012 and working as patient collaborator and embedded patient researcher on several national and international research studies. I was a chair committee member of group that developed the European Standards of Care For Newborn Health, I am a public reviewer for the Health Research Board and the British Medical Journal Open Pediatrics, a member of the National Office of Research Ethics Clinical Trials Committee and have published papers in several journals including the British Medical Journal, The Lancet, The Journal of Obstetrics and Gynaecology and Trials.

Patient and public involvement (PPI) envisages a relationship built throughout the lifespan of a research project or service improvement initiative between academics, clinicians and PPI colleagues in order to inform, plan, execute and, in due course, disseminate and translate research and findings. To be meaningful, all stakeholders need to actively engage in this exchange of expertise. PPI is about empowering patients and the public to have a say; it’s about the health service listening and responding to the views of patients and the public; it facilitates the development and improvement of services and promotes a cultural change with the aim of improving the patient experience.

PPI is about understanding and valuing the benefits of involving patients and the public in the planning, development and improvement of health services, to provide patient-centred healthcare services that meet the needs of the population.

Very Low Birth Weight can have life altering consequences, not only for affected infants but also for their families, health systems and society. NPEC’s VLBW Infant audit, guided by PPI partners, provides an invaluable opportunity to learn from collected data and outcomes of care, and leverage the audit findings to effect meaningful system changes that will positively impact future outcomes.

Claire Jones shares her experience of contributing as a patient representative with NPEC

Severe Maternal Morbidity is the term used to encompass specific chronic and acute pregnancy and childbirth complications; it’s not somethings a pregnant woman wants to know about or even consider as her reality, but it is a reality for a small percentage of women; 1 in 168 maternities in 2020. For that 1 woman and her family, severe maternal morbidity is 100% her reality.

So much can be learned from her experience, not only in terms of this and other audits but also in terms of education and support for the pregnant woman.

Every statistic in this audit represents the experience of a woman in a maternity unit in Ireland in 2020; a woman at her most vulnerable, relying on the ongoing education, professionalism and care afforded to her by the obstetric and midwifery team at her bedside.

The findings of the SMS audits over the last 9 years continues to lend itself to educating our obstetric and midwifery staff; greater education results in earlier identification and treatment of SMM and more positive outcomes for our wives, daughters, sisters, mothers and friends.

Maternal welfare is the priority of this audit.

The universal and timely contribution of the unit co-ordinators within the 19 maternity units demonstrates the want for improvement, understanding and education on Severe Maternal Morbidity. This audit encompass all elements of a woman’s being in order to educate and accurately identify quality improvement initiatives and make recommendations to improve maternal care for the woman in our lives today.

These recommendations must be acted upon and funded by the appropriate agencies in order to progress change. The welfare of our pregnant women in maternity hospitals today is at stake.

National Perinatal Epidemiology Centre

Dept. of Obstetrics and Gynaecology, 5th Floor, Cork University Maternity Hospital, Wilton, Cork