Healthcare wants patients at the centre. So, why are they still outside the room?
There was some extraordinary science at ESMO this year. But one of the most telling stories was about who couldn't get through the door.
Patient advocates were barred from the exhibition hall.
That’s right, patient advocates. The very people we spend so much time talking about as essential partners in healthcare.&;
Yet, here they were, forced to cancel meetings with industry partners, move them to cafes outside the venue, or run them on Zoom. Even advocates with ESMO accreditation found themselves classified as members of the public: people who needed to be ‘shielded from advertising, rather than recognised as professional partners’.1
According to WECAN, the European cancer patient advocacy network, the decision to exclude participants who are ‘not licensed healthcare prescribers’ came late in the day, with advocacy groups informed less than two weeks before congress.1 For more than a decade, they’d been able to access the ESMO exhibition. Then suddenly, they couldn’t.
WECAN’s response was unequivocal: advocates come to congresses to work. To meet the people designing clinical trials, running research, and developing new treatments. And to make sure the priorities of patients, survivors, and carers are part of the conversation.1
It's hard to see how anyone benefits from making those conversations more difficult.
What led to this?
The problem goes beyond ESMO. This year, similar restrictions have affected patient advocates at the European Hematology Association congress (Stockholm), the European Association of Urology (London), and the European Breast Cancer Conference (Barcelona).1,2 Different congresses, different locations, different diseases. But the same people left on the outside looking in.
There are regulatory reasons behind these restrictions. ESMO points to EU Directive 2001/83/EC, the EFPIA Code of Practice and its implementation in Spain by Farmaindustria. EFPIA guidance on medical congresses, published in July 2025, explicitly restricts public access to promotional exhibition areas.3,4 But, as WECAN says, “rules on medicines advertising were never meant to keep patients out of the room where research is discussed.”1 Without a more consistent approach, advocates will continue to face different interpretations of rules from one congress to the next.
For me, the bigger issue is what this tells us about healthcare.
We talk about a connected ecosystem, bringing together scientific, clinical, and commercial expertise. Yet, we struggle to give patients the same standing.
It raises an uncomfortable question: why are the people we're trying to help still fighting to be part of the conversation?
I've always believed patients should play a leading role in shaping healthcare. And the more complex healthcare becomes, the more important their involvement is.
We can have groundbreaking science, the most sophisticated technology, and the best clinical minds working on a disease. But none of that tells us what it's like to live with it. What matters most to someone facing a diagnosis. What makes a treatment manageable or a clinical trial impossible to participate in. And what gets in the way of people receiving the care they need.
Patient advocates bring those realities into discussions that might otherwise overlook them. They challenge assumptions, ask different questions, and help us understand whether the things we're developing actually add value.
And perhaps most importantly, they remind us that there’s a person behind every patient.
That matters, not least because of a fundamental disconnect in how healthcare is designed.
The patient as an autonomous person
Healthcare has traditionally organised people by disease and viewed them solely as patients. But people don't leave their expectations at the door when they enter the healthcare system. Their experiences elsewhere shape what they want from healthcare, too. They expect choice, convenience, and a say in decisions that affect their lives.
It's a shift from patient to personal. And away from the paternalistic model of healthcare, where doctors made decisions and patients were expected to follow them. A patient is someone a system manages. But that person has autonomy and makes their own decisions. They have their own priorities, needs, and experiences. And they expect healthcare to fit around their lives, rather than the other way round.
We see this vividly with GLP-1s, where people are making treatment choices based on their everyday experiences. They're weighing up the impact on their family life, their work, what they can afford, and how a treatment makes them feel. They pause, restart, or switch brands as circumstances change. And it's their lives, not just their clinical needs, driving those decisions.
In cancer, lived experience can be even more profound. But here’s the thing: what matters most to people living with the disease isn't always what the experts assume.
Ultimately, experience matters. It shapes how people understand their options, the decisions they make, and whether the care available to them works in the context of their lives.
That’s something we can't fully appreciate through clinical data or professional expertise alone. We need to find better ways of bringing that lived experience into healthcare.
There are practical ways to make that happen.
- Stop assuming we know best. Give advocates a voice from the outset. Listen before designing. Understand what people are experiencing, worrying about, and trying to achieve.
- Recognise different realities. Language, culture, health literacy, and personal circumstances all shape how people experience cancer. Reach beyond the usual voices.
- Stop confusing information with understanding. People need trusted guidance that helps them act, not just more content.
- Make lived experience the litmus test. Involve advocates in the development of services and communications at every stage. What works in theory doesn't always work in real life.
Of course, some lived experiences aren’t helpful at all. Just ask the advocates at ESMO et al.
If we're serious about making healthcare more human, we can't treat the people who understand what it's like to live with disease as outsiders. Whatever the regulatory complexities, we need to find a way for advocates to do their work.
Because when we shut them out, everyone loses.
References
- WECAN (2026). Patient Advocates Are Partners. 23 October 2026. Available at: https://wecanadvocate.eu/featured/patient-advocates-are-partners/
- Geissler J. (2026). Jan Geissler on the Evolving Role of Patient Advocates at EHA2026. OncoDaily, 13 June 2026. Available at: https://oncodaily.com/voices/jan-geissler-520372
- EFPIA and IPCAA. Legal and Ethical Rules Governing Medical Congresses. July 2025, p7. Available at: https://www.efpia.eu/media/k2ebhum4/rules-governing-medical-congresses-final-july-2025.pdf
- ESMO (2026). ESMO Congress 2026: Compliance. Available at: https://www.esmo.org/meeting-calendar/esmo-congress-2026/industry-participation/preparatory-information-for-industry/compliance
About Claire Gillis
Claire Gillis is CEO of VML Health, a global health communications network. She is a scientist, health economist, entrepreneur, and business leader, with an academic foundation in pharmacology. Her campaigning for health equity has awarded her The Women in Marketing Leadership Award for contributions to Health and Wellness and she has also been included in the HERoes women role model lists from Yahoo Finance.
