From lived experience to system change
News from our partner
Mandy C. Daly
from Irish Neonatal Health Alliance (INHA) shares why patient expertise belongs in research, policy, regulation, and healthcare decision-making.
When I first stepped into the world of patient advocacy, I never imagined that my journey would one day include conversations with regulators, global advisory committees, and policymakers—let alone opportunities to help shape the future of healthcare and academia.
Like many advocates, my starting point was deeply personal: a lived experience that demanded something better. What began as motivation rooted in my own family’s story gradually became a form of professional expertise—because when advocates allow themselves to think bigger, our impact expands with us.
The question is no longer whether your skills are needed, but how far you are willing to let those skills take you.
My own advocacy work has taken many forms: founding the Irish Neonatal Health Alliance (INHA), contributing to the European Standards of Care for Newborn Health, participating in governance across more than 80 research studies, and serving on several international boards, including the NIDCAP Federation International. I also hold roles within Ireland’s regulatory and research landscape—from grant approval panels to the National Office for Research Ethics, the National Office of Clinical Audit, expert groups developing clinical guidelines, the Health Products Regulatory Authority, and as an Embedded Patient Researcher at University College Cork’s Clinical Research Facility.
Within academia, I design and deliver education for healthcare professionals, industry partners, students, researchers, and fellow patients. I also mentor PhD candidates and emerging patient experts, helping build the capacity needed for a stronger, more collaborative research ecosystem.
In healthcare and policy, I work with the Department of Health on strategic initiatives—such as expanding the role of pharmacy—and with the Health Service Executive on projects including the development of a national Patient Portal and governance for a new maternity hospital. I lead public-facing training on clinical guideline development, contribute to Health Technology Assessments with HIQA, engage in quality improvement and patient safety work, and serve on a stakeholder group supporting Ireland’s implementation of the European Health Data Space.
These opportunities didn’t come because I was the loudest voice in the room. They came because I recognised something essential: patient advocates hold a form of expertise that no clinical degree, research training, or policy manual can replicate. Increasingly, decision-makers understand this too—and they are looking for ways to embed it meaningfully.
Trained patient experts stand at a rare intersection: we bring the lived experience of navigating healthcare systems while also understanding the scientific, regulatory, and ethical structures behind them. That dual perspective is powerful. Yet too many advocates underestimate their value—seeing themselves as storytellers rather than strategists, contributors rather than leaders.
But lived experience is data. Insight is evidence. And participation in decision-making is not symbolic—it directly strengthens the quality and relevance of the outcomes.
My own neonatal journey began with a simple desire: to ensure that no other family would face the challenges mine did. But storytelling alone wasn’t enough. Real change required stepping into the spaces where decisions are made—policy, regulation, ethics, research design, clinical audit, guideline development, academia, and technology assessment. Through roles with the NIDCAP Federation International, the European Foundation for the Care of Newborn Infants, and the Global Alliance for Newborn Care, I saw first hand that systems only evolve when people with lived experience help shape them from within.
Advocates are not outsiders—we are essential contributors. Opportunities don’t simply appear; we create them.
For new patient experts wondering where to start, my advice is simple: start where it matters most to you. Start where you see gaps. Start where silence has consequences.
In 2010, that silence was a fragmented Irish neonatal landscape where the actors were never consulted about what was working and most importantly what the challenges were. Together with Consultant Neonatalogist, Dr. Jan Franta, the INHA co-produced Ireland’s first neonatal benchmarking report, Positive Steps for Prematurity. It identified critical gaps—from the absence of a 24-hour national neonatal transport service to the lack of a national model of neonatal care, national screening, structured neonatal education, and public awareness about preterm birth. The INHA, as Ireland’s only multi-stakeholder collaborative platform for neonatal health, became the launch pad for tackling these issues.
When maternity leave legislation overlooked families of premature infants, we campaigned until it changed. When the lack of a national model for neonatal care affected outcomes, we partnered with key stakeholders to create one.
During the COVID-19 pandemic, we advocated tirelessly to keep infants and families together in NICUs—a campaign that gained international recognition.
Patient advocacy has evolved far beyond raising awareness.
Today, it drives co-production, shared decision-making, and patient-centred innovation. Thinking big is not about prestige—it’s about recognising the influence your insight can have on clinical practice, research design, academic structures, regulatory systems, and national policy.
Healthcare and academic ecosystems are strongest when they include patient partners who are informed, confident, and unafraid to lead. Patient expert training equips advocates with a language decision-makers understand—the language of science, ethics, and evidence.
So look for the tables where decisions are made, and take your seat. Join advisory boards. Challenge policy gaps. Shape research proposals. Publish your insights. Mentor others. Collaborate widely.
Your voice is not supplementary.
Your experience is not optional.
Your impact is not accidental.
Think big—because the future of healthcare depends on advocates who act.
Kind regards,
Mandy C. Daly
Irish Neonatal Health Alliance (INHA)