When I first entered the world of advocacy I never imaged that my journey would lead to discussions with regulators, global advisory committees and policymakers, shaping the future of healthcare and academia. Like many advocates my starting point was deeply personal: a lived experience that demanded change. Personal motivation can become powerful professional expertise if we allow ourselves to think bigger.
For graduates of the EUPATI Patient Expert Programme, the question is not whether your skills are needed but how far you are willing to let these skills take you. My advocacy portfolio spans founding the Irish Neonatal Health Alliance, shaping European Standards of Care, contributing to governance across more than 80 research studies, and serving on multiple international boards. In addition, I hold key roles with several national and regulatory bodies, including the Health Research Board’s funding panels, the National Office of Research Ethics, the National Office for Clinical Audit, Expert Advisory Groups developing Clinical Guidelines in Maternity, Obstetrics and Bereavement, the Health Products Regulatory Authority, and the University College Cork Clinical Research Facility, where I serve as an Embedded Patient Researcher.
Within the academic sector, I design and deliver curricula for medical professionals, healthcare students, industry partners, patients, and researchers. I also provide mentorship to PhD candidates and emerging patient experts, supporting capacity-building across the research ecosystem.
In the healthcare and policy space, I collaborate with the Department of Health on strategic policy development e.g. Expanding The Role Of Pharmacy and work closely with the Health Service Executive on initiatives such as developing a national Patient Portal. I also serve on the governance board overseeing the development of Ireland’s new maternity hospital at the St. Vincent’s Hospital site, lead public-facing training initiatives focused on clinical guideline development and do Health Technology Assessments with the Health Information and Quality Authority and engage with quality improvement and patient safety initiatives.
None of these opportunities came because I was the loudest voice in the room. They came because I recognised something fundamental: patient advocates have a type of expertise that clinical training, research degree or policy textbook cannot provide. Increasingly decision-makers are acknowledging this and seeking opportunities to integrate it meaningfully.
EUPATI graduates stand at the intersection of lived experience and scientific understanding. We know how healthcare systems feel for patients and their families and we also understand the scientific, ethical and regulatory frameworks that shape them. This dual perspective is rare and transformative. Many advocates underestimate their value and see themselves as storytellers rather than strategists and contributors rather than leaders. Lived experience is not a side note, it is data. Insights are evidence and participation in decision-making is not symbolic; it strengthens the quality and relevance of decisions.
My neonatal journey began with a desire to ensure that no family would face the same challenges as mine did. But storytelling alone cannot drive system change. Real change requires stepping into policy-making, regulation, ethics committees, research design, clinical audit, clinical guideline development, academia, and health technology assessment, spaces I once assumed were far beyond my reach. Through roles with the NIDCAP Federation International, the European Foundation For The Care Of Newborn Infants and the Global Alliance For Newborn Care, I learned that systems only evolve when people with lived experience influence them from within. We are not outsiders offering commentary; we are experts contributing essential knowledge. Opportunities just don’t appear – we create them.
Many new graduates wonder where to begin. Start with what matters to you. Start where you see gaps. Start where silence has consequences. When I learned that Ireland lacked a 24-hour National Neonatal Transport Service, I tackled the issue head on. When maternity leave legislation excluded mothers of premature infants, I campaigned until the law was changed. Not having a National Model of Neonatal Care was adversely affecting the outcomes for our preterm community so I joined forces with influential stakeholders to develop one. Every initiative began with the belief that the system could do better and a refusal to wait for someone else to take the lead.
Patient advocacy has moved beyond raising awareness; it has become the driving force behind co-production, shared decision-making and patient centred innovation. Thinking big is not about seeking prestige, it’s about recognising the influence your insight can have on clinical practice, research design, academia, regulatory processes and national policy. Healthcare and academic eco-systems are strongest when they include patient partners who are informed, confident and not afraid to lead. EUPATI graduates are uniquely equipped for this. The EUPATI training has given graduates a language that decision-makers understand- the language of science, ethics and evidence.
Look for tables where decisions are made and take your seat. Join advisory boards, challenge gaps in policy, guide research proposals, publish your insights, mentor others and collaborate widely. Your voice is not supplementary, your experience is not optional and your impact is not accidental. Think big because the future of healthcare, research and academia depend on advocates who DO.
This was written by Mandy Daly, EUPATI Fellow, Director of Education & Research ,Irish Neonatal Health Alliance (INHA) who is also involved with PEOF as Co-Chair of the Made With Patients Awards. Mandy also works with the Health Research Consent Declarations Committee supporting the Implementation of the European Health Data Space in Ireland. She is also involved in the Cervical Screening Programme for Menopausal Women.