Anticipation for the EUPATI Annual General Meeting 2026 began for me in a rather unexpected place: a passport control queue at Brussels Airport. After five hours waiting to get through passport control, I was still determined not to miss the opening discussions. Fortunately, the event was being streamed online, so I joined the first sessions from the queue and made good use of the time.It was not quite the start I had planned, but in some ways it reflected something important about patient engagement: finding ways to participate, adapt and stay connected when circumstances create barriers. When I finally arrived in person, the energy and sense of shared purpose were already clear. And one message stayed with me throughout the two days: patient involvement is changing. The question is no longer simply whether patients have been invited into the room. We also need to ask whether our knowledge influences the questions being asked, the decisions being made and, ultimately, the outcomes–and what difference our involvement actually makes.
The EUPATI Annual General Meeting 2026, held in Brussels on 24 and 25 September under the theme “Data & Dialogue”, brought together EUPATI Fellows, National Platform representatives, patient organisations, researchers, regulators, health technology assessment representatives and other partners. As a EUPATI Fellow, FH Europe Foundation Ambassador and FHEF Community Manager, I found many of the discussions particularly relevant to the work we do within the inherited lipid community.
One of my strongest takeaways was that patients should not simply be seen as people to consult. We can be evidence partners.
Patients can help identify unmet needs, shape research questions, select outcomes that are meaningful to the community, interpret findings and communicate results. But this requires involvement early enough to make a difference. Asking patients for their views once the research priorities, methodology or outcomes have already been decided is very different from genuinely co-creating research.
For me, this is where we need to keep challenging ourselves. When patients contribute their knowledge and experience, can we clearly see where that contribution influenced a decision? Can we explain what changed because patients were involved?
Patient Experience Data were naturally at the heart of many discussions. It can help us understand how a condition, treatment or healthcare pathway affects people's lives beyond clinical efficacy–the “softer” information that tells us what living with a condition or taking a treatment actually means for a person and those around them. This evidence can come from surveys and questionnaires, interviews and focus groups, patient preference studies, registries, patient journey mapping, qualitative research and insights generated directly by communities.
But an important point raised during the meeting was that we do not always have a shared understanding of what Patient Experience Data actually is. Not all real-world data captures patient experience, and patient experience evidence is not yet used consistently in formal decision-making.
The challenge is therefore to protect the richness of lived experience while applying enough structure and methodological rigour for it to inform research, regulation and healthcare decisions. That means appropriate consent, responsible data stewardship, clear analysis and transparent reporting–but also, importantly, a willingness to share.
Healthcare and research are often more comfortable with numbers than with qualitative evidence. Yet numbers alone cannot always tell us what matters most to people living with a condition. One example discussed during the meeting really stayed with me: in a global survey, pain and fatigue were ranked as greater concerns than fractures for the community concerned. It was a simple but powerful illustration of how patient-generated evidence can challenge assumptions about what matters most.
It made me think about inherited lipid conditions too. Are we adequately capturing diagnosis-related anxiety? The impact of family risk? People's experiences of screening? Treatment burden? Uncertainty? What it means to live with a lifelong condition, even when you may feel perfectly healthy?
Clinical indicators are essential, of course, but they do not always tell the whole story.
Education and capacity building were central themes throughout the meeting. Patients and patient representatives need opportunities to build their knowledge and confidence–whether that means understanding research and medicines development, communicating with different stakeholders, raising awareness or contributing effectively to projects.
But education cannot only be directed at patients.
Researchers, regulators and other professionals also need the knowledge and skills required to involve patients meaningfully and, crucially, to recognise and use the expertise that patients bring. Inviting someone to a meeting does not automatically mean they have been meaningfully involved. People need to understand why they are there, what is expected of them and where they can influence decisions. They need clear information, plain-language documents–and yes, that includes the emails we send–time to prepare and ask questions, feedback after contributing, and recognition of their time, knowledge and experience.
The EUPATI Patient Expert Training Programme helps patients understand medicines research and development and where patient involvement can make a difference. National Platforms bring these opportunities into national and local contexts, while condition-specific organisations bring another essential piece: the knowledge needed to understand and represent the needs of a particular community. These different forms of expertise complement each other.
Technical language remains one of the most obvious barriers to meaningful involvement. Complicated invitations, project documents and meeting materials can leave people feeling that they are not qualified enough to participate, even when they have exactly the lived experience and knowledge that a project needs. For me, plain language is therefore much more than a communications preference. It is part of making patient involvement genuinely inclusive.
If people cannot understand the information they receive, how can we expect them to participate confidently and on equal terms? Accessible communication opens participation to people beyond those who are already comfortable with scientific, medical or professional terminology. This is something I see as particularly important in Ambassador training, patient education and research collaborations. Accessibility should not be something we add at the end. It needs to be built in from the beginning.
Another recurring theme was trust. Reliability, legitimacy, transparency, honest conversations, meaningful feedback and respect all contribute to trusted patient engagement. When patients and communities share information, they should be able to ask very practical questions:
Why is this information being collected? Who will have access to it? How will it be used? Will artificial intelligence or other technologies be involved? What happens when the project ends? Will the community hear about the results? And, again, what changed because people contributed?
I think these questions become even more important as patient organisations and communities generate increasing amounts of data themselves. How do we generate knowledge together while ensuring that it remains accessible, transparent and useful to the communities that helped create it? Patients should not disappear from a project as soon as their data have been collected.
One question from the meeting particularly resonated with me: projects routinely think about return on investment, but what about the patient community's return on engagement?
Patients and patient organisations contribute time, knowledge, relationships, credibility and community trust. That contribution has value.
Before asking people to give their time to a project, perhaps we should ask more systematically: Will this benefit the community? Will participants gain useful knowledge or skills? Can their contribution genuinely influence research, healthcare or policy? Will they receive feedback? Is there a realistic opportunity to achieve something meaningful?
Patient involvement should not be measured simply by how many patients attended a meeting or completed a survey. We should also look at what their participation achieved–including for the people who gave their time and expertise.
I also came away thinking about the importance of strong national and local connections.
EUPATI National Platforms help bring patient education and involvement closer to communities, but every country has a different context in terms of funding, infrastructure, volunteer capacity and institutional support. Local-language training and locally relevant networks can make opportunities much more accessible.
During the meeting, I had the opportunity to connect with National Platforms from the Netherlands, Estonia, Austria and Switzerland. I see real potential in strengthening links between these networks and organisations working on inherited lipid conditions at national level.
It is not only about creating more opportunities for individual patient advocates. It is also about building capacity across our organisations and communities.
The meeting concluded around six connected principles: patient experience matters; Patient Experience Data should be systematically integrated into research and development; work should be co-created with patients; new skills are needed; education must cover the whole ecosystem; and progress depends on partnership.
For me, these ideas come back to one simple point: Listening is not enough.
We have spent years making the case that patient voices should be heard. The next step is making sure that patient knowledge is respected, supported and systematically used.
Patients should not simply be contributors to research and healthcare. With the right education, structures, trust and opportunities to influence decisions, we can become genuine partners in shaping them.
Written by Elsie Evans