#InspireForImpact: Reflections on Three Decades in Patient Engagement
International Patient Engagement Day, 2026
People — Practice — Partnerships — Progress.
When I look at the ISPEP community today, I find myself reflecting on a journey that began nearly 30 years ago.
In 1996, I worked on my first patient video with the European Aids Treatment Group ) EATG). I could never have imagined then where that experience would lead me, the people I would meet, the challenges I would encounter or the privilege of eventually founding and leading a vibrant, caring professional society dedicated to patient experience and engagement on an international scale.
Looking back, I can see a thread running through every stage of that journey. It is the belief that people's experiences matter, that their voices deserve to be heard, and that listening must lead to action.
That belief has been shaped by my personal life, my experiences in advocacy, my work in the life sciences industry and, above all, the people who have shared their stories with me.
It started with understanding how health affects families
When I was 15, my mum had a stroke.
When someone you love experiences a life-changing health event, healthcare stops being an abstract concept. It becomes personal. You begin to understand that behind every diagnosis, every treatment decision and every clinical outcome is a person, a family and a life that continues beyond the healthcare encounter.
You see that the impact of illness extends far beyond the medical condition itself. It affects everyday life, relationships, expectations and the future people had imagined for themselves.
At 15, I could not have known how these experiences would shape my professional journey. But looking back, I recognise how important it is to understand health and healthcare through the eyes of the people living with the consequences.
That understanding has stayed with me throughout my career.
When listening isn't enough: the importance of advocacy
Over the years, my experiences have taught me that listening to patients is essential, but sometimes listening alone is not enough. I have experienced what it means to have to lobby for a child with a rare condition to gain access to treatment.
When a child needs treatment, the issue is never simply a clinical or administrative decision. There is a child whose life and future matter, a family trying to navigate a complex system, and people doing everything they can to make sure their needs are understood.
Advocating in those circumstances brings home the reality of unmet need. It highlights the distance that can exist between what is possible, what is available and what a patient or family can actually access.
It also raises important questions. Who gets heard? Whose needs are understood? What happens when the evidence, the system or the decision-making process does not adequately reflect the reality of the person who needs help?
These experiences reinforce why patient engagement must be more than consultation. It must create opportunities for patients and families to influence decisions, challenge assumptions and help shape solutions.
A patient voice matters most when it has the opportunity to make a difference.
Hearing unmet needs on a global scale
My work as a Global Patient Officer brought another important perspective.
Across three therapeutic franchises, I had the opportunity to hear about patient unmet needs from different communities, each with its own experiences, challenges and priorities. Working across therapeutic areas and geographies reinforces an important lesson: there is no single patient experience.
People may share a diagnosis or a broad treatment pathway, but their circumstances, expectations, barriers and priorities can be very different. Geography, access to healthcare, family circumstances and individual experiences all influence what matters to them. Hearing these perspectives at a global level also makes you realise how much we still have to learn.
Sometimes, what matters most to a patient is not the question professionals initially think to ask. Sometimes, the most significant unmet need sits outside the boundaries of a clinical endpoint or an established way of working. And sometimes, the insight that changes our thinking comes from a conversation that challenges everything we assumed we already knew.
For me, these experiences strengthened the conviction that patient engagement must happen early, meaningfully and consistently. We need to listen before decisions are made, understand the differences between patient communities and ensure that what we hear has a genuine opportunity to influence what happens next.
It is not enough to collect insights. We must be prepared to act on them.
Nearly three decades of learning from patients
My first patient video with EATG in 1996 was the beginning of a professional journey that has continued to evolve over almost three decades.
From personal experience, to advocacy for a child with a rare condition, to hearing unmet needs across therapeutic franchises, each chapter has brought a different perspective on the importance of patient engagement.
Together, they have reinforced the same principle: people with lived experience have knowledge and expertise that we cannot afford to overlook. Patients are not simply the recipients of healthcare. They are experts in their own experiences. Their insights can challenge assumptions, identify overlooked needs and help us understand what meaningful outcomes really look like.
When we bring lived experience together with research, clinical expertise and practical knowledge, we create a stronger foundation for decisions and progress. And when we give people the opportunity to learn from one another, individual insights can have an impact far beyond the original conversation.
That is the power of a community.
Founding ISPEP: turning shared purpose into collective impact
As Founder and CEO of ISPEP, I am incredibly proud to see the growth of a vibrant, caring community of patient engagement professionals, patients, advocates, researchers, healthcare professionals, educators, industry partners and organisations.
Building a professional society is about much more than creating a network or delivering activities. It is about creating a place where people feel connected, where their contributions matter and where collective knowledge can be translated into meaningful progress.
It is about bringing together people who might approach a challenge from very different perspectives, but who share a commitment to improving patient experience and engagement in PEP.
It is about creating opportunities to learn, share, challenge and collaborate.
And it is about recognising that the strength of a community lies in its members: in their generosity, curiosity, commitment and willingness to help others succeed.
That is what I see in ISPEP.
Our 2026 theme, #InspireForImpact, captures exactly what this community means to me.
#InspireForImpact: inspired by every member of our community
I have spent almost three decades working in patient engagement, and I continue to be inspired by the people I meet and the work they do.
I am inspired by patients who share their experiences, sometimes in deeply personal circumstances, because they want to make things better for others.
I am inspired by families and advocates who refuse to let important needs go unheard.
I am inspired by researchers who are willing to listen and challenge their own assumptions.
I am inspired by healthcare professionals who want to understand what matters to the people they care for.
I am inspired by colleagues who recognise that understanding unmet needs is the starting point for meaningful change.
And I am inspired by members of our community who give their time, share their knowledge, support one another and create opportunities for others to contribute.
We are inspired by every member of our community because every person brings a perspective, an experience or an idea that can help us see things differently.
You do not need to lead a major project to make a difference. You might ask a thoughtful question, share an insight, contribute to an article, join a workshop, support a colleague or connect two people who should know each other. Those individual actions matter.
They create connections. They challenge thinking. They help knowledge travel further. And they can inspire someone else to take the next step.
That is how inspiration becomes impact.
The impact we are creating together
This International PEP Day, we have an opportunity to celebrate how far our community has come.
Our collective achievements tell a powerful story:
4,500 members and followers, connecting people around a shared purpose.
60 countries with an ISPEP member, reflecting our growing global reach.
450 life sciences organisations represented in our wider impact.
50 partnerships and sponsors, helping to build connections and extend our reach.
45 organisations at our IMPACT event.
121 articles, with 50% patient-authored, ensuring that lived experience is visible in the knowledge we share.
40 PEP Talks and 20 presentations, creating opportunities to exchange ideas and insights.
12 masterclasses, supporting learning and professional development.
10 V2V studies, contributing to our evidence-building work.
7 PAG bursaries, supporting patient and public involvement.
5 best-practice whitepapers and 2 best-practice workshops, helping translate knowledge into practical guidance.
4 regional workshops spanning Africa, APAC, Asia and North America.
3 fireside chats, creating space for open conversations and shared perspectives.
3 award nominations, recognising excellence and raising the profile of PEP.
1 global community, united through #IPEDay2026.
Every number represents people giving their time, sharing their knowledge and contributing to something bigger than themselves.
Behind every patient-authored article is a voice that deserves to be heard. Behind every workshop is an opportunity to learn. Behind every partnership is a relationship built around shared purpose. And behind every achievement is a collective effort.
We should be proud of what we have accomplished. But we should also remember that our greatest impact will not be measured solely by the number of activities we deliver or the people we reach.
It will be measured by what changes because of them.
People — Practice — Partnerships — Progress
For me, these four words connect our purpose with our potential.
People -- always the most important part of any community.
Practice is about putting what we learn into action. It is about moving beyond good intentions and embedding meaningful patient engagement into the way we work.
Partnerships build by recognising the value of every voice and bringing people together. It is the collective strength we create when lived experience, professional expertise and shared knowledge are treated as complementary sources of insight.
Progress is what happens when we use that knowledge and collective power to make a difference. It is the improvements we achieve together and the possibilities we create for the future.
None of these happens in isolation. They depend on people being willing to listen, collaborate, learn and act. That is why a vibrant, caring professional community matters so much.
Looking back — and looking forward
When I think about the journey from 1996 to 2026, I feel grateful for the experiences and people that have shaped it.
My mum's stroke when I was 15 gave me an early understanding of how profoundly health can affect a person and their family. Working on my first patient video with EATG introduced me to patient-focused work. Advocating for a child with a rare condition showed me the importance of fighting for access to treatment. And my experience as a Global Patient Officer, hearing unmet needs across three therapeutic franchises, reinforced the importance of listening to different patient communities and ensuring their experiences inform decisions.
Three decades in patient engagement have taught me that there is always more to learn, more to understand and more we can do together.
Founding and leading ISPEP has given me the opportunity to bring those lessons into a wider community — a community that continues to grow, learn and inspire me.
I am proud of what we have built. I am proud of the people who contribute to it. And I am excited about what we can achieve next.
But above all, I remain inspired.
Inspired by patients who share their stories. Inspired by families who advocate for better outcomes. Inspired by professionals who keep learning. Inspired by partnerships that make new things possible. And inspired by every member of our community who believes that we can make a difference.
So, this International PEP Day, my message is simple.
Thank you for being part of this journey. Thank you for your contribution, your curiosity, your generosity and your commitment.
You may not always see the impact of what you do. But your ideas, your conversations, your questions and your willingness to share can make a difference in ways you may never fully know.
You inspire me. You inspire one another. And together, we can inspire impact.
Here is to the next chapter of our journey — continuing to put knowledge into practice, harnessing the power of our community and creating progress together.
Happy International PEP Day 2026.
Emma Sutcliffe Founder and CEO, ISPEP
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