Rheumatosphere is an initiative started in Glasgow, UK, in 2012; its aim is to raise awareness about arthritis and arthritis-related research. We have a dedicated team of rheumatologists, basic scientists, PhD students, and nurses, all of whom believe that engagement is a key element of the work that we do.
We strongly believe that engaging with the public is an essential part of scientific life, as the majority of work carried out by researchers is publicly funded. Therefore, we have a responsibility to take the conclusions of our work to the public and make it as easily accessible as possible. Further to this, we feel it is also essential to engage and inspire the next generation of scientists and healthcare professionals. If we do not take the time to engage with the next generation, then the work we start today will not be continued in the coming years.
Another important aspect that Rheumatosphere is planning to focus on is engagement with patients living with rheumatic disease. In order to achieve this, we will provide them with relevant information, highlighting key advances in our knowledge of pathology and treatment. We must then listen to the patients’ unmet needs and concerns, and use this information, both clinically and at the bench, in order to guide care and research effectively. This two-way relationship leads to valuable outcomes for both parties.
Rheumatosphere has already developed several engagement modalities for dissemination of information, as well as the collection of information to better improve the engagement we provide. Our activities include musculoskeletal ultrasound, poster material related to immunology (such as ‘superhero cells’ and ‘cell anatomy biscuits’), and our ‘cell café’. Throughout all of these activities, we aim to talk to the public and find out what they already know about arthritis. We then use these opportunities to both expand their knowledge and challenge their opinions. During our interactions with the public, we also wish to teach some basic biology and immunology, and we try to link that discussion to the development of arthritis or other rheumatic diseases. We use hand ultrasound machines as a relatively easy and pleasant way to look at the basic anatomy of the hand, and to show how the tendons that attach to the bones and muscle facilitate movement. By teaching these basic concepts, we can then open a dialogue about changes that may occur to these structures during disease processes and then transition into the work that we are able to conduct in the laboratory to try to prevent these pathological changes from occurring.
We have also been collaborating with the Glasgow Science Centre for the past 3 years. We give children the chance to see their body working using an ultrasound machine and highlight how we can move our fingers. Through these interactions in the schools we also hope to raise awareness about careers in the healthcare profession and science, and provide a fun and interactive introduction that we hope will resonate with the children. During both 2015 and 2016, the Rheumatosphere team attended both Explorathon and the Middle of Scotland Science Festival. Over 2 years at these events, we were able to interact with >3,000 members of the public, and over half of the individuals that we spoke to lived with or knew someone who lives with rheumatoid arthritis. Encouragingly, >80% of these individuals wanted to engage more with Rheumatosphere.
Moving forward, Rheumatosphere is looking to engage with wider audiences. Currently, the majority of the events that we attend are scientific in nature. We wish to go to non-science based community events and talk to a more general audience, in order to further raise awareness about rheumatic disease. We wish to talk to the public about the advantages of early diagnosis and highlight the importance of seeking the advice of the primary healthcare provider if early symptoms of arthritis are present. We plan to do this in conjunction with EULAR’s ‘Don’t Delay Connect Today!’ programme that was launched at this year’s congress. One of our other upcoming projects is the development of a patient questionnaire and, with the help of the National Rheumatoid Arthritis Society (NRAS), we wish to gather information in order to create a patient-tailored engagement programme. This programme will address the concerns of the patients and will be a fluid programme that will change in accordance with the needs of the patients we engage with.
Rheumatosphere has a firm belief that engaging with the public, children, and patients is an essential part of our vocation as scientists and clinicians, and only by engaging, inspiring, and empowering them will we be able to deliver fully on the many promising developments in arthritic research. We believe our approach also emphasises that no one is fighting arthritis and rheumatic diseases alone, and that we are all part of one big team.
