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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Only one day left for the great day!

🌟 Don't miss our webinar on digital health & patient care! 🌟

⏲️ Time is running out to secure your spot at our transformative webinar.

💻 In this rapidly evolving healthcare landscape, digital health is the way forward, and we want you to be at the forefront of this revolution.

Here's a glimpse of what awaits you:

✅ Engage in enriching discussions led by the esteemed Dr. Philipp Bosch.
✅ Explore the boundless potential of technology in advancing healthcare.

🗓️ Date: September 28th (tomorrow!).
🕗 Time: 20:00 CET.

This is your opportunity to be part of a digital health revolution that's shaping the future of patient care.

Join us and empower yourself with the knowledge that can transform lives! 📱🏥

The webinar will also be streamed live on Facebook. 🎥

Secure your spot now by registering:
📧 Email: secretariat@lupus-europe.org

If you have registered for Zoom already, please ensure you attend via Zoom 🤗.

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2 days ago
LUPUS EUROPE

‼️ Exercise is not only fundamental to general health but especially vital for individuals facing rheumatic and musculoskeletal diseases (RMDs) like #lupus.

According to the World Health Organization (WHO), physical inactivity is a significant global health risk, underlining the importance of staying active for overall well-being.

👩‍⚕️ EULAR, recognising this critical link between physical activity and health, has taken proactive steps by convening a task force to study the impact of lifestyle behaviours, including exercise, on RMDs.

Their evidence-based recommendations emphasise the undeniable benefits of exercise for individuals dealing with RMDs, including lupus ⬇️:

1️⃣ Engaging in regular exercise not only promotes general health but also directly impacts RMD symptoms and progression. It's a win-win for your health!

2️⃣ Exercise significantly improves pain, fatigue, function, and overall quality of life for individuals with RMDs like lupus. Your efforts today can yield a better tomorrow.

3️⃣ Try to avoid a sedentary lifestyle. Health professionals should urge individuals with RMDs to steer clear of prolonged physical inactivity, as sedentary behaviour is linked to detrimental health effects in both the general population and those with RMDs.

4️⃣ Aim, at least, for that moderate intensity! Aerobic and strengthening exercises, performed at the right levels, can truly make a difference in managing lupus and its effects on your body.

5️⃣ Remember, it's never too late to start. Exercise is safe and a step towards enhancing your health, even if you've been less active before. Every step counts!

6️⃣ Whether in a group or alone, find what works best for you. The community and support can make a difference, but what matters most is finding what motivates you to keep moving.

🦋 If you're dealing with lupus, know that exercise can be a game-changer for you too, especially for managing symptoms and enhancing your quality of life.

📷 Embrace the power of exercise in managing lupus and share your journey using #kicklupus.

Let's inspire and support each other towards a healthier and more active life despite the challenges of lupus! 💪

ard.bmj.com/content/82/1/48
... See MoreSee Less

‼️ Exercise is not only fundamental to general health but especially vital for individuals facing rheumatic and musculoskeletal diseases (RMDs) like #lupus.

According to the World Health Organization (WHO), physical inactivity is a significant global health risk, underlining the importance of staying active for overall well-being.

👩‍⚕️ EULAR, recognising this critical link between physical activity and health, has taken proactive steps by convening a task force to study the impact of lifestyle behaviours, including exercise, on RMDs. 

Their evidence-based recommendations emphasise the undeniable benefits of exercise for individuals dealing with RMDs, including lupus ⬇️:

1️⃣ Engaging in regular exercise not only promotes general health but also directly impacts RMD symptoms and progression. Its a win-win for your health!

2️⃣ Exercise significantly improves pain, fatigue, function, and overall quality of life for individuals with RMDs like lupus. Your efforts today can yield a better tomorrow.

3️⃣ Try to avoid a sedentary lifestyle. Health professionals should urge individuals with RMDs to steer clear of prolonged physical inactivity, as sedentary behaviour is linked to detrimental health effects in both the general population and those with RMDs. 

4️⃣ Aim, at least, for that moderate intensity! Aerobic and strengthening exercises, performed at the right levels, can truly make a difference in managing lupus and its effects on your body.

5️⃣ Remember, its never too late to start. Exercise is safe and a step towards enhancing your health, even if youve been less active before. Every step counts!

6️⃣ Whether in a group or alone, find what works best for you. The community and support can make a difference, but what matters most is finding what motivates you to keep moving.

🦋 If youre dealing with lupus, know that exercise can be a game-changer for you too,  especially for managing symptoms and enhancing your quality of life. 

📷 Embrace the power of exercise in managing lupus and share your journey using #KickLupus.

Lets inspire and support each other towards a healthier and more active life despite the challenges of lupus! 💪

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1 week ago
LUPUS EUROPE

Physical activity (PA) is crucial for everyone, but it holds even greater importance for individuals dealing with lupus and other chronic autoimmune diseases.

Lupus presents unique challenges, and maintaining an active lifestyle can significantly impact the well-being of those living with this condition.

🔵This week, let's highlight the unique benefits of physical activity for individuals with lupus:

1️⃣ Management of Chronic Conditions: 💪 Regular physical activity can help prevent and manage comorbidities like cardiovascular risk and osteoporosis.

2️⃣ Pain Management and Mobility: 🏃Exercise has been proven to enhance joint flexibility, reduce pain, and improve mobility in patients with lupus.

3️⃣ Mental Health and Coping:🧘‍♀️ Exercise can be powerful tool for managing mental health issues like depression and anxiety.

4️⃣ Maintaining Healthy Weight: ⚖️ Regular physical activity can aid in weight management and contribute to a healthier body mass index, which is crucial for managing lupus symptoms effectively.

5️⃣ Improving Fatigue Levels: 🏋️ If you live with fatigue, include exercise as part of your treatment!

6️⃣ Enhancing Bone Health: 🦴 Exercises can improve bone density, helping to mitigate the risk of osteoporosis.

7️⃣ Empowerment and Self-Efficacy: 🌟 Achieving fitness milestones and goals can boost self-efficacy and provides a sense of accomplishment and confidence.

🔴 For individuals with lupus, it's essential to work with healthcare professionals to design a personalized exercise plan that takes into account their specific symptoms, limitations, and overall health status. While staying active is beneficial, the type and intensity of exercise should be tailored to the individual to ensure a safe and effective approach to managing lupus.

That is why we, in collaboration with certified physical therapists, have created a 𝘁𝗮𝗶𝗹𝗼𝗿𝗲𝗱 𝗲𝘅𝗲𝗿𝗰𝗶𝘀𝗲 𝗽𝗿𝗼𝗴𝗿𝗮𝗺. Designed in five levels, this program has received endorsement from renowned European Lupologists. Check it out now! ➡️ www.lupus-europe.org/me-lupus/

🌈 Your journey to improved well-being can begin with us!

Let's #kicklupus together!💪

Always consult a healthcare provider before beginning any exercise regime
... See MoreSee Less

Physical activity (PA) is crucial for everyone, but it holds even greater importance for individuals dealing with lupus and other chronic autoimmune diseases.

Lupus presents unique challenges, and maintaining an active lifestyle can significantly impact the well-being of those living with this condition.

🔵This week, lets highlight the unique benefits of physical activity for individuals with lupus:

1️⃣ Management of Chronic Conditions: 💪 Regular physical activity can help prevent and manage comorbidities like cardiovascular risk and osteoporosis.

2️⃣ Pain Management and Mobility: 🏃Exercise has been proven to enhance joint flexibility, reduce pain, and improve mobility in patients with lupus.

3️⃣ Mental Health and Coping:🧘‍♀️ Exercise can be powerful tool for managing mental health issues like depression and anxiety. 

4️⃣ Maintaining Healthy Weight: ⚖️ Regular physical activity can aid in weight management and contribute to a healthier body mass index, which is crucial for managing lupus symptoms effectively.

5️⃣ Improving Fatigue Levels: 🏋️ If you live with fatigue, include exercise as part of your treatment! 

6️⃣ Enhancing Bone Health: 🦴 Exercises can improve bone density, helping to mitigate the risk of osteoporosis.

7️⃣ Empowerment and Self-Efficacy: 🌟 Achieving fitness milestones and goals can boost self-efficacy and provides a sense of accomplishment and confidence.

🔴 For individuals with lupus, its essential to work with healthcare professionals to design a personalized exercise plan that takes into account their specific symptoms, limitations, and overall health status. While staying active is beneficial, the type and intensity of exercise should be tailored to the individual to ensure a safe and effective approach to managing lupus.

That is why we, in collaboration with certified physical therapists, have created a 𝘁𝗮𝗶𝗹𝗼𝗿𝗲𝗱 𝗲𝘅𝗲𝗿𝗰𝗶𝘀𝗲 𝗽𝗿𝗼𝗴𝗿𝗮𝗺. Designed in five levels, this program has received endorsement from renowned European Lupologists. Check it out now! ➡️ https://www.lupus-europe.org/me-lupus/ 

🌈 Your journey to improved well-being can begin with us!

Lets #KickLupus together!💪

Always consult a healthcare provider before beginning any exercise regimeImage attachmentImage attachment+6Image attachment
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