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What do we mean by patient and public involvement?
Patient and public involvement refers to patients, service users, carers, families, people with lived experience of health conditions (who may or may not be current patients), patient advocacy organisations, and members of the public. We aim to work in partnership with representatives in the planning, designing dissemination and translation of clinical audit and research.1
The widely used definition of Patient and Public Involvement in research is: ‘--- research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them’.2
Patient involvement in NPEC Audits: Current Practices and Future Directions
Dr. Tamara Escañuela Sanchez, Postdoctoral Researcher at the National Perinatal Epidemiology Centre, delivered a presentation at our last NPEC Study Day 2025, focusing on the importance of Patient and Public Representatives in clinical audits conducted by the NPEC. She emphasized how these representatives provide essential patient perspectives, enhancing the relevance, transparency, and inclusivity of audits. However, she also acknowledged persistent challenges, including recruitment, training, and resource limitations. To address this, the NPEC plans to establish Patient Advisory Panels and develop enhanced support resources, ensuring a structured and comprehensive approach to patient involvement in clinical audits.
Involvement can include people getting involved in these ways:
Members of a project steering, governance group
Setting audit and research priorities
Provide feedback on reports and other relevant materials
Advising and developing patient information leaflets or other relevant research/audit materials
Presenting at the NPEC study day
Co-applicants for funding for a research project
Engagement is about awareness raising, sharing, disseminating knowledge about the work of the NPEC, including its research and audits.
This also relates to engaging patients, service users, carers, families using health and social care services, people with lived experience of health conditions (who may or may not be current patients), patient advocacy organisations, and members of the public in a conversation about research and clinical audit. This might be through:
NPEC Study Day
Research open days or dissemination events
Through the media and social media
Participation refers to when people take part in a research study (clinical audit) as participants.
This might be a clinical trial, taking part in an interview or focus group or online activity. Usually, it involves people consenting to take part and have their data collected so that researchers can answer a particular research question.3
3. Adapted from Patient and Public Involvement in HSE research Knowledge Translation, Dissemination, and Impact A Practical Guide for Researchers
Mandy Daly is a parent of a preterm infant born in 2006. Since that time she has been advocating in the neonatal space and established The Irish Neonatal Health Alliance (www.inha.ie).
In Mandy's words: 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.
Mandy contributes to the Very Low Birth Weight Annual Reports. She also particpated in our NPEC Study day by sharing her and her daughter's story of strength and growth which was welcomed and applauded by the audencie. Watch Mandy's talk here
Claire Jones is a member of the NPEC Severe Maternal Morbidity Governance Committee. Claire provides a patient perspective into the conduct of the audit and also reviews the report prior to publication. In addition, Claire composes a message from the patient representative each year, highlighting what she feels is important within the report.
The advocacy Claire provides can make a real difference in progressing recommendations made by the NPEC.
“With this and previous reports I am further educated on Severe Maternity Morbidity, and I am encouraged to see recommendations from previous reports taken on board and progressed; specifically in relation to Major Obstetric Haemorrhage (MOH), morbidly adherent placenta and blood loss” Claire Jones, 2021 Severe Maternal Morbidity Report.
A quality improvement initiative was undertaken between the NPEC and the National Women and Infant’s Health Programme (NWHIP). September 2023 was Post Partum Haemorrhage (PPH) spotlight month during which all 19 maternity centres participated in drills and awareness programmes. Moreover, there are now National Standardised toolkits in place to address the risk and management of Major Obstetric Haemorrhages for maternity units in Ireland.
Furthermore, during 2023, a national audit of major obstetric haemorrhage audit (MOH) was undertaken in addition to the Severe Maternal Morbidity Audit.
click here to watch Claire's Jones talk in our NPEC Study Day 2024.
Siobhan Whelan served as a patient representative with the NPEC since 2013 and was also a member of the Perinatal Mortality National Clinical Audit Governance Committee (PMNCAGC).
This committee oversees the Perinatal Mortality audits across the 19 maternity centres in Ireland. They committee meets twice a year to discuss and review the audits, determine their direction and select additional areas for audit. The NPEC’s audit report is examined by the PMNCAGC and their comments and feedback are integrated into the final report for publication. Siobhan also crafts messages from the patient perspective, focusing on aspects of the report, often advocating for recommendations to enhance maternity services in Ireland. siobhan has also been a speaker at previous NPEC Study Days.
By voicing their opinions on the suggested guidelines from the annual reports, they can further advocate for owners of the guidelines to proceed with the recommendations.
“Through my work with other bereaved parents I have learned that even if the cause of death is assumed known at or before delivery, it is very important the choice is offered to all parents” Siobhan Whelan on the need to improve services around autopsy following a neonatal death. 2019 Perinatal Mortality Report.
As of October 2023, A public consultation on the Coroner Reform Consultation has been established by the Department of Justice which should lead to an improvement in coronial services supporting perinatal deaths.
Mairie Cregan, is the Chair and co-founder of Féileacáin (Stillbirth and Neonatal Death Association of Ireland). Her personal experience with the loss of her daughter, Liliana, in January 2006, just a day before the due date, motivated her to establish the charity due to the lack of support available at that time.
Under her leadership, Féileacáin provides various services to support bereaved parents, including support meetings, memory boxes, and free counseling for parents and siblings. The organization has also funded the provision of cuddle cots in every maternity unit in Ireland, allowing grieving parents to spend more time with their deceased infants.
Mairie has been an advocate for acknowledging and supporting parents dealing with disenfranchised grief, emphasizing the importance of recognizing and naming their lost children. She has participated in various interviews and podcasts to shed light on these issues.
In addition to her work with Féileacáin, Mairie has been involved in initiatives like the "Remember Our Names" campaign, urging the Irish government to make the Stillbirth Register public, reflecting her commitment to ensuring that all babies are acknowledged and remembered.
Mairie is also a member on the NPEC Governance Committee.
Delegates from the Patient Advocacy Service; Padraig Ruanne, Caitriona Carr, Alexandria Collins and Georgina Cruise are members of the NPEC Governance Committee in addition to the Perinatal and Severe Maternal Morbidity Governance Groups.
The Patient Advocacy Service is an independent, free, and confidential service that provides information and support to individuals who wish to make a formal complaint through the relevant complaints policy regarding the care they have received in a Public Acute Hospital or Nursing Home. It also offers support to individuals in the aftermath of a Patient Safety Incident.
The service is entirely funded by the Department of Health, ensuring full independence from the HSE and all other service providers.
The Patient Advocacy Service assists individuals in lodging formal complaints about their experiences in a Public Acute Hospital or Nursing Home. It provides a phone line, an online contact form, and website resources to guide individuals through the complaint process.
The service helps individuals access information about the HSE complaints process, known as ‘Your Service, Your Say’ (for Public Acute Hospitals), as well as the complaints process for Nursing Homes. It offers guidance on what to include in a formal complaint and how to structure it. Additionally, the service supports individuals in exploring their options after receiving a response to their complaint.
Commissioned by the Department of Health, the Patient Advocacy Service has been developed by the National Advocacy Service.
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