Michael Wilbur: Are our conferences leaving new advocates behind?
Estimated reading time: 9 minutes
Nakedness, and the people willing to admit they are lost
Many of the RARE Revolution Insider® readers will be familiar with the Hans Christian Andersen fable ‘The Emperor’s New Clothes’. Two swindlers persuade an emperor that they have made him a magnificent outfit that is invisible to anyone who is foolish or unfit for their position. In reality, no clothes exist.
The emperor cannot see the clothes, but admitting this would risk exposing him as unworthy to be king. His courtiers face the same dilemma, so they all pretend to admire the imaginary outfit. The watching crowd follows their example. It is only a child who says plainly that the emperor is naked.
The story works because the child has no office or reputation to defend and no one can declare the child unfit for the role of being a child. Free from the pressures affecting the adults, the child can simply describe what is in front of them.
The story has therefore become a metaphor for the way social pressure, fear of judgement and doubt in one’s own perceptions can lead people to accept, praise or remain silent about something that is unclear or even plainly flawed, until someone with less at stake finally says what others have been reluctant to admit.
I often thought about this tale when I was first working in the rare disease ecosystem, and often struggled to follow the conversation. And I found myself thinking about it again in June, while attending the European Conference on Rare Diseases and Orphan Products (ECRD).
ECRD was certainly not an emperor with no clothes. It was a well-attended conference with a substantial programme and excellent opportunities to meet people from across the rare disease community.
People who have spent years working in the field naturally want conferences to move the debate forward. They want new evidence, more ambitious ideas and serious examination of the questions that have not yet been resolved.
But there is another audience whose experience we discuss much less often: the people attending for the first time.
I happened to be at ECRD alongside several young patient advocates who had never previously attended a large, rare disease conference. They were intelligent, motivated and eager to participate. Yet, like the child in Andersen’s story, they had no hesitation in admitting something that others might have been too embarrassed to say: much of the time, they were lost.
They encountered a dense mixture of acronyms, institutions, legislation, policy processes and technical ideas. Speakers and moderators frequently referred to organisations and initiatives without explaining what they did, why they mattered or how they related to one another. Discussions often began several steps into an argument, assuming a level of background knowledge that a first-time participant could not possess.
Once they lost the thread, they became bored. There’s a risk that some of them will conclude rashly that they are not suited for this type of activity.
Their honesty also made me think about my own early experience working in the rare disease space. I often found conversations difficult to follow. I suspect many other new colleagues felt the same way. The rare disease world has its own language, history and institutional architecture, and it takes time to understand how everything fits together.
But, rather like the courtiers in the fable, we did not want to admit that we were lost. We worried that asking someone to explain an acronym or provide basic context would expose us as inexperienced or unqualified. Rather than interrupting to request clarification, we nodded along and hoped that understanding would eventually catch up with us.
Over time, it did catch up, and most of us learned the language. We became familiar with the organisations, processes and debates. The danger is that once we have acquired that knowledge, we forget what it was like not to have it. Acronyms that once seemed impenetrable begin to feel self-explanatory. References to complex policy structures sound perfectly ordinary. We stop noticing how much prior knowledge is required to enter the conversation.
This presents a genuine challenge for conference organisers. Do we risk aiming for a supposed sweet spot that pleases almost nobody: content that is not sufficiently advanced for highly experienced participants but remains too difficult for people who are newly engaged?
The answer cannot be to make every presentation more basic. Experienced advocates, policymakers, clinicians and researchers have a reasonable expectation that major conferences will challenge them and advance the discussion. But neither can we assume that inviting newcomers into the room is the same as enabling them to participate.
A good conference should be capable of serving people with different levels of knowledge. Clear communication is not simplistic communication. Providing context does not require abandoning complexity. It means creating more than one route into the discussion.
Prepare people before they arrive
First-time participants could be offered a practical orientation before the main programme begins. This might explain the principal organisations, policy processes and recurring acronyms they are likely to encounter. It should go beyond providing a glossary. People need to understand how the pieces fit together: who makes decisions, how different institutions relate to one another and what is currently at stake.
A short online briefing, introductory session or accessible background document could allow newcomers to arrive with a basic map of the territory. Conference organisers might also identify which sessions assume prior knowledge and which offer an introduction to a subject.
Design sessions in layers
Speakers should be encouraged to begin with the problem, explain why it matters and provide the minimum context needed to understand the discussion. They can then move towards the latest developments and the more difficult or contested questions.
This does not need to consume half the presentation. A minute of clear orientation can make the following fifteen minutes considerably more useful.
Programmes could also label sessions as introductory, intermediate or advanced. Some subjects might be addressed through both an accessible overview and a more specialised workshop. This would allow newcomers to build their knowledge without requiring experienced participants to remain permanently at introductory level.
Moderators have an important role as well. They can interrupt politely when an acronym has not been explained, ask a speaker to clarify why a point matters and periodically summarise where the discussion has reached. This benefits not only newcomers but also people participating in a second language and anyone whose professional expertise lies elsewhere.
Create human routes into the conference
A mentor or conference buddy can make an enormous difference to a first-time participant. The purpose is not to supervise or patronise them, but to give them someone they can ask: What did that acronym mean? Why is this initiative important? Who should I speak to after this session?
Small daily debriefs could also provide a space in which basic questions are explicitly welcomed. Anonymous question tools can help reveal points of confusion that people are reluctant to raise in front of a large audience.
These mechanisms recognise that people do not learn to participate in complex professional communities simply by being placed in the room. They learn through relationships, explanation and repeated opportunities to ask questions without being made to feel inadequate.
Give emerging advocates meaningful roles
New and young advocates should not be confined to panels about “the youth perspective” or invited only to tell their personal stories. They should have opportunities to contribute as moderators, rapporteurs, programme advisers and members of organising groups.
That participation may require preparation, mentoring and support. This is not evidence that they are unready. It is how people become ready.
Too often, we invite emerging advocates into spaces whose agendas, language and expectations have already been determined by people with years of experience. We then ask them to contribute confidently. When they remain quiet, we risk interpreting their silence as a lack of interest or readiness rather than asking whether we have created the conditions in which they can participate.
Developing the next generation is a shared responsibility
The wider issue extends beyond the design of a single conference. If the rare disease community wants a strong next generation of patient advocates, responsibility cannot rest solely with the individuals trying to find their way into it.
Patient organisations need to identify and prepare emerging advocates, explain how the movement works and give them opportunities to practise leadership.
Established advocates need to share their knowledge, networks and platforms. Those of us who have learned how to navigate these spaces should remember that our familiarity was acquired, not innate.
Conference organisers need to design programmes for people with different levels of experience, rather than assuming that one format will serve everyone equally well.
Speakers, researchers, policymakers and industry representatives need to communicate in ways that make meaningful participation possible. Expertise should be demonstrated through the ability to explain complex ideas clearly, not through the density of the language used.
Funders also have a role. Supporting participation means more than paying a registration fee. Emerging advocates may need help with travel, accessibility, translation, preparation, mentoring and the time required to participate properly. Leadership development should be treated as a sustained investment, not a single invitation to attend a meeting.
The young advocates I attended ECRD with were not disengaged, incapable or uninterested. They simply had the confidence to admit when the rest of us had failed to explain what we were talking about.
Like the child in ‘The Emperor’s New Clothes’, they said plainly what others may have felt too embarrassed, or become too accustomed, to say. We should listen to them, not because every conference must be designed entirely around beginners, but because a movement that cannot bring new people into its conversations will eventually find that it is having those conversations only with itself.
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