We believe that patient input into scientific events, like the European Lupus Meeting or EULAR, is incredibly important. Our hope was that by watching our Webinar on “How to make a scientific poster” by Simon Stones you would get the tools and know how to create a poster for those events! Simon Stones has a wealth of experience in creating and presenting posters for patient organisations at big scientific events! If you missed this Webinar, you still have time to catch up by following this link: https://www.facebook.com/LupusEurope/videos/1334899316855679/

 

The webinar was so successful that we caught up again with Simon a few months later and asked him a number of follow-up questions! He very kindly gave us his time and this Q&A is the result. We hope you will find it as interesting as we did!

 

  1. Is there a main/common topic you have noticed patients tend to have when they want to create a scientific poster?

 

Historically, most patient-authored posters have focused on patient organisation activities and/or projects. For example, the development of an educational resource, or an awareness raising campaign. At conferences and congresses, such as the EULAR Congress, these tend to be submitted to the ‘PARE’ programme (short for people with arthritis/rheumatism in Europe), and have been quite different to traditional scientific posters, in terms of content, style, and quality. Some have certainly been more engaging and interesting than traditional scientific posters, while others have been weaker in terms of the content quality, which can negatively impact on the credibility of the work. This is certainly no criticism, as we must remember that patients receive no training in creating and disseminating information in this way, unlike researchers, which is why training and support to patient authors is so important. It is worth noting, however, that over the last few years, I have seen an increasing number of posters where patients are co-authors with researchers and clinicians on research-related posters, which is a really positive step as we continue to bridge the gap between patients and researchers/clinicians.

 

 

  1. Can a scientific poster be about a project, for example about the use of sunscreen in SLE patients?

 

Absolutely, as long as the project has some clear aims. Before I go into the details, I find it helpful to think of there being two kinds of posters – the aim of both is to inform and educate others. The first is the marketing poster used to convey a message, like the ‘stay at home’ posters we’ve seen during the COVID-19 pandemic. They are intended to give a clear message, often with a call to action (e.g., stay at home, get tested, or accept your vaccination). The second is the scientific poster, which is used to summarise the details of a specific project or initiative. Traditional scientific posters follow a conventional layout of different sections. These start with the introduction/background (setting the scene for the topic, and why the research/initiative was needed), the aim/objective (what you set out to do), the methods (what was done), the results (what happened), and the discussion/conclusion (what does this mean). However, this is often a completely new approach for patient organisations, though I always recommend you follow the layout. You will have to do so when submitting an abstract to be considered at conferences and congresses.

 

So, let’s go back to the fictious example of using sunscreen in people with SLE. The project aimed to understand why people with SLE don’t consistently use sunscreen throughout the year and develop a resource to increase uptake (aim), since it is known that ultraviolet light can trigger a lupus flare in at least 60% of patients (background). The patient organisation partnered with qualitative researchers at a university and clinicians at one of the specialist lupus centres to conduct a series of focus groups with patients and their caregivers. The focus groups explored the reasons why people did and did not use sunscreen (methods). The focus groups showed that people were unaware that they should be using sunscreen all year when exposed to ultraviolet light and had not been advised on the most appropriate sunscreen to use. Others also had concerns over the expense of frequent sunscreen use (results). From this, a new resource was developed to prompt clinicians in taking to patients about the use of sunscreen use and prescribing sunscreen, and one was developed to inform and educate patients about the importance of sunscreen (discussion/conclusion).

 

The poster needs to have this ‘structure’ to help guide the reader on a journey of what your project was about!

 

  1. What was the first scientific poster and/or abstract you submitted? What would you change in retrospect

 

The first poster I was involved with was back in 2014 for the UK’s public involvement conference, INVOLVE. I was co-author on a research project looking at mobile apps for young people with long-term health conditions. I was keen that the poster ‘looked’ different to other posters and pushed for a mobile phone appearance to make it stand out, though constrained slightly by the convention of traditional posters coming from an academic institution. In hindsight, I would have been much more vocal about what were the key points to be portrayed, and the style in which they should be presented. This is much easier to say now with years of experience and insights into what makes a good poster! I have also learned that a good poster is just half of the story – dissemination online, and engaging people face-to-face (when that used to happen) is just as important… you’ve got to remember that your poster is a bridge between people passing by, and them engaging in a conversation with you about your work.

 

  1. Which is your favourite scientific poster that you have made?

 

Each of the posters that I have made, or been involved in creating as a co-author, has been a proud achievement! One which I co-authored earlier in 2021 is shown below, on the topic of the patient voice in peer-reviewed medical publications. With the switch to virtual congresses, we have adapted to be creative with the poster format. Historically, you had one poster layout, and paper copies for people to take home. Now, while the one poster layout remains, you can add QR codes linking to websites with more content (e.g., videos, audio recordings), and even upload multiple page posters, with hyperlinks from the first page of the poster to different sections (though this is only available on certain conference poster platforms). With this one, I just love the style of the poster, which conveys lots of important information, in quite a visual and enticing manner.

  

  1. What is your favourite scientific poster that someone else has created?

 

I don’t think I can pick a favourite! I do, however, have some favourite styles which I’ve picked up over the years. The #betterposter design has picked up traction in recent years, where the poster consists of a main finding, in big type, plain language and with appropriate visual prompts; a side bar of useful and relevant data; and another side bar with bullet points introducing the study, its methods and results. The best posters are those which are memorable and entice you to ‘find out more’. Interestingly, many of the most memorable ones have been those presented by patient authors – not just because of their design, but because of the storytelling that presenters provide alongside the poster, which is just as important as the design itself!

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5 hours ago

✅ Yes! As many of you guessed, the October theme of the #kicklupus campaign is... vaccines!

💉 Vaccination is a crucial topic, especially for individuals dealing with lupus, as lupus has been proven to make people more susceptible to infections and complications. Therefore, promoting vaccination is paramount in the care and overall well-being of people with lupus.

🛡️ Vaccines play a vital role in bolstering the immune response against various diseases, reducing the risk of infections and their potential severity. For individuals with lupus, getting vaccinated can be a game-changer, providing added protection against infections that could be especially challenging for their immune systems.

Join us in the #kicklupus challenge! Share how you prevent infections in lupus. Your experiences and insights are valuable in creating a supportive community and raising awareness about the importance of proactive measures in managing lupus effectively.

Together, we can make a difference! 💜

💎 In line with our commitment to spreading awareness and information, we invite you to explore the importance of vaccination in patients with lupus through the #Lupus100 website. This initiative offers resources and educational materials in multiple European languages, facilitating access to critical information about lupus and vaccinations ⤵️

lupus100.org/en/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus

Remember you can also check on #lupusgpt in your preferred language! lupusgpt.org/

🇩🇰 lupus100.org/da/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇩🇪 lupus100.org/de/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇪🇸 lupus100.org/es/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇬🇷 lupus100.org/el/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇫🇷 www.rhumatismes.net/index.php?id_q=863
🇮🇹 lupus100.org/it/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇳🇱 lupus100.org/nl/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇷🇴 lupus100.org/ro/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇫🇮 lupus100.org/fi/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇺🇦 lupus100.org/uk/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇷🇺 lupus100.org/ru/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
... See MoreSee Less

✅ Yes! As many of you guessed, the October theme of the #KickLupus campaign is... vaccines!

💉 Vaccination is a crucial topic, especially for individuals dealing with lupus, as lupus has been proven to make people more susceptible to infections and complications. Therefore, promoting vaccination is paramount in the care and overall well-being of people with lupus.

🛡️ Vaccines play a vital role in bolstering the immune response against various diseases, reducing the risk of infections and their potential severity. For individuals with lupus, getting vaccinated can be a game-changer, providing added protection against infections that could be especially challenging for their immune systems.

Join us in the #KickLupus challenge! Share how you prevent infections in lupus. Your experiences and insights are valuable in creating a supportive community and raising awareness about the importance of proactive measures in managing lupus effectively.

Together, we can make a difference! 💜

💎 In line with our commitment to spreading awareness and information, we invite you to explore the importance of vaccination in patients with lupus through the #Lupus100 website. This initiative offers resources and educational materials in multiple European languages, facilitating access to critical information about lupus and vaccinations ⤵️

https://lupus100.org/en/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus

Remember you can also check on #LupusGPT in your preferred language! https://lupusgpt.org/

🇩🇰 https://lupus100.org/da/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇩🇪 https://lupus100.org/de/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇪🇸 https://lupus100.org/es/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇬🇷 https://lupus100.org/el/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇫🇷 https://www.rhumatismes.net/index.php?id_q=863
🇮🇹 https://lupus100.org/it/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇳🇱 https://lupus100.org/nl/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇷🇴 https://lupus100.org/ro/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇫🇮 https://lupus100.org/fi/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇺🇦 https://lupus100.org/uk/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇷🇺 https://lupus100.org/ru/questions/how-should-you-manage-your-vaccinations-when-you-have-lupusImage attachmentImage attachment+7Image attachment

1 CommentComment on Facebook

Got the Covid vaccin last week, Saturday the flu vaccin. #kicklupus

4 days ago

🤩 We are thrilled to see our Chair, Jeanette Andersen, hosting the latest EULAR PARE podcast!

🎙️ In this episode, Jeanette speaks with Gonzalo Tobar, a representative of Asopan and Agrupación Lupus Chile, who shares valuable insights into the challenges faced by people living with #RMDs in South America, highlighting the unequal access to healthcare and the inspiring work of patient organisations.

🦋 At Lupus Europe, we are well aware that inequities can be major barriers affecting the quality of life and health outcomes of #Lupus patients, not only in South America but also in Europe.

📊 This issue is so significant that it has been included in our strategic plan for 2025, and we will soon share more about our efforts to understand it better.

🌟 Don't miss out on this powerful discussion on how communities are overcoming barriers to care.

open.spotify.com/episode/56xtnDwlIk9KmrJV5Ridnr
... See MoreSee Less

🤩 We are thrilled to see our Chair, Jeanette Andersen, hosting the latest EULAR PARE podcast!

🎙️ In this episode, Jeanette speaks with Gonzalo Tobar, a representative of Asopan  and Agrupación Lupus Chile, who shares valuable insights into the challenges faced by people living with #RMDs in South America, highlighting the unequal access to healthcare and the inspiring work of patient organisations.

🦋 At Lupus Europe, we are well aware that inequities can be major barriers affecting the quality of life and health outcomes of #lupus patients, not only in South America but also in Europe.

📊 This issue is so significant that it has been included in our strategic plan for 2025, and we will soon share more about our efforts to understand it better.

🌟 Dont miss out on this powerful discussion on how communities are overcoming barriers to care.

https://open.spotify.com/episode/56xtnDwlIk9KmrJV5Ridnr
6 days ago

🍂 Welcome October, welcome new #kicklupus challenge!

🤔Can you guess our October theme based on this sneak peek image?

👀 Stay tuned because this month, we're unveiling a powerful way to fortify our health!
... See MoreSee Less

🍂 Welcome October, welcome new #KickLupus challenge!

🤔Can you guess our October theme based on this sneak peek image?

👀 Stay tuned because this month, were unveiling a powerful way to fortify our health!

3 CommentsComment on Facebook

Thank you! Great moment indeed.

Stop smoking

I am so delighted to have found this page, very supportive and informative. I was diagnosed with SLE lupus in 2015, my symptoms started out with severe fatigue, poor balance, numbness, heat intolerance, and anxiety. I was unable to go back to work, so I tried analgesics for about 6 years. Tried every shot available, and all made me sick. In November 2023, I started on lupus Herbal formula from www. multivitamincare .org , the treatment worked incredibly for my SLE condition. I used the Natural Lupus Herbal formula for a total time period of 3 months, it totally reversed lupus. I had a total decline of all symptoms including joint stiffness, ulcers, and others. Sometimes, I totally forget I ever had Lupus.

1 week ago

🔴 People with #Lupus are twice as likely to develop cardiovascular disease as healthy people.

👀 Learn more about cardiovascular risk management in rheumatic and musculoskeletal diseases (RMDs) with the EULAR recommendations ➡️ ➡️ ard.bmj.com/content/81/6/768

🔴 𝗖𝗮𝗿𝗱𝗶𝗼𝘃𝗮𝘀𝗰𝘂𝗹𝗮𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗶𝘀 𝗸𝗲𝘆 in RMDs Like #Lupus.

1️⃣ Always talk to your physician about preventive measures.
2️⃣ Work to minimise risk factors ⤵️

- Don't smoke🚭
- Practise exercise🏃‍♂️
- Have a healthy diet🍏

#WorldHeartDay
... See MoreSee Less

🔴 People with #lupus are twice as likely to develop cardiovascular disease as healthy people.

👀 Learn more about cardiovascular risk management in rheumatic and musculoskeletal diseases (RMDs) with the EULAR recommendations ➡️ ➡️ https://ard.bmj.com/content/81/6/768

🔴 𝗖𝗮𝗿𝗱𝗶𝗼𝘃𝗮𝘀𝗰𝘂𝗹𝗮𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗶𝘀 𝗸𝗲𝘆 in RMDs Like #lupus.

1️⃣ Always talk to your physician about preventive measures.
2️⃣ Work to minimise risk factors ⤵️

- Dont smoke🚭
- Practise exercise🏃‍♂️
- Have a healthy diet🍏

#WorldHeartDayImage attachment

1 CommentComment on Facebook

I am so delighted to have found this page, very supportive and informative. I was diagnosed with SLE lupus in 2015, my symptoms started out with severe fatigue, poor balance, numbness, heat intolerance, and anxiety. I was unable to go back to work, so I tried analgesics for about 6 years. Tried every shot available, and all made me sick. In November 2023, I started on lupus Herbal formula from www. multivitamincare .org , the treatment worked incredibly for my SLE condition. I used the Natural Lupus Herbal formula for a total time period of 3 months, it totally reversed lupus. I had a total decline of all symptoms including joint stiffness, ulcers, and others. Sometimes, I totally forget I ever had Lupus.

LUPUS EUROPE Uniting people with Lupus throughout Europe
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