BHD Community Symposium Feedback

The BHD Foundation was delighted to host the BHD Community Symposium online on October 8th, 2022. If you couldn’t attend, you can read our research report and our advocacy report. We will be making the recording available to all registered attendees very soon.

We asked attendees to complete a short survey at the end of the symposium to provide their feedback. This feedback will help to inform future events. We had 19 responses, 7 from researchers and/or clinicians and 12 from people with BHD. We were thrilled that everyone found the symposium useful and that they learned something new. We asked people to vote for their top 3 sessions. The most popular sessions were

1. Research Talks – we heard from researchers around the world discuss their work on BHD
2. Meet the Experts – we had 3 ‘rooms’ featuring a Q&A with skin, lung and kidney BHD experts
3. ‘BHD and Me’ – a patient-led panel discussion where people with BHD shared their lived experiences

Importantly, everyone thought that the research talks were clear. As this event was designed to be accessible for all members of the BHD community, this was a priority for us. However, the proportion of people who strongly agreed with the statement ‘The research talks were clear’ did differ between researchers/ clinicians and people with BHD. Over half (4/7) researchers/ clinicians strongly agreed that the research talks were clear. A quarter (3/12) people with BHD strongly agreed that the research talks were clear. Everyone else that provided feedback agreed with the statement. At future community-focused symposiums we will strive to improve this statistic.

We also asked 3 open questions:

1. What did you like about the BHD symposium?
2. How could the symposium have been improved?
3. What would you like to see at next year’s symposium?

The responses to the first question have been used to create the word cloud you can see in the poster below and we have included select responses at the end of this blog. When asked how the symposium could be improved, the overwhelming response was that you wanted more! There were requests for more research and longer research talks, more patient testimonies and more opportunities for networking. Another common response was accessing the symposium due to time differences. As a charity that supports people with BHD around the world, we understand that time differences can be challenging. We had over 200 people from 22 different countries registered for this year’s symposium. To reach as many people as possible we recorded the event. We are making the recording available to everyone who registered very soon to watch at your convenience.

When asked what you would like to see at next year’s symposium, again the response was that you wanted more! The feedback we got requested more research, sessions on the treatment of BHD and more panel discussions. There was also a request to feature more work from underrepresented countries. This year, we were delighted to have researchers from 8 different countries present their work. Next year, we hope to welcome even more researchers.

Luckily, our symposium next year will be held over 2 days on October 13th and 14th 2023. It will be taking place in London, UK but there will also be an option to join online. Although research-focused, everyone is still invited to attend. We will be announcing further details about next year’s symposium soon. To receive updates, please sign up to our newsletter.

Selected quotes from the feedback survey in response to ‘What did you like about the BHD symposium?’:

“Breakout session enabled me to “meet” other scientists I know from reading but not to talk with. Before the end of the conference I was exchanging emails with one and may well ultimately do research with (just like after and in-person conference).”

“Perfect organisation, not easy to blend a public of patients, clinicians and researcher so well!”

“The chance to speak to experts – since my diagnosis 4 years ago I have tried to get answers to questions but have been given the wrong advice or no response. So thank you so much.”

“It is hopeful to see research is happening and get answers to some of my questions as well as more information for practitioners.”

“I enjoyed the atmosphere of being taken serious and cared for, because most doctors here in Germany have never heard of this disorder. Thank you very much for letting me attend the symposium.”

“I liked hearing about kidney cancer surgery and learning something new every time, especially when presenters can present in a way we can understand as non experts.”

“Seeing how other people from various parts of the world are together with a common goal.”

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