If you have experience in research, it is likely you are aware of public engagement, but do we truly understand the importance and significance of this two-way communication and the benefits it can have for all parties involved? The National Co-ordinating Centre for Public Engagement (NCCPE) defines public engagement as “the myriad of ways in which the activity and benefits of higher education and research can be shared with the public. Engagement is by definition a two-way process, involving interaction and listening, with the goal of generating mutual benefit.”1.
Public engagement is everywhere, including the Glasgow Science Festival, Explorathon, the Middle of Scotland Science Festival () and Edinburgh Science Festival. Can you spot what they have in common? They are all easily accessible from central Scotland. The combined population from the 4 main cities is approximately 1.5 million. That leaves roughly 4 million people in other, often rural, areas. People living in more remote areas don’t have the same access to these informative, fun science events as those living in and around the main cities – yet, they are still affected by the same diseases, which public engagement can aim to draw attention to.
The research in our lab is focused on rheumatic and musculoskeletal diseases, including rheumatoid arthritis, and as such, we aim to engage widely about this topic. Rheumatoid arthritis is a chronic disease where the immune system attacks the joints, causing inflammation and pain. If left undiagnosed, or uncontrolled, this disease causes progressive damage and disability, which ultimately has a major impact on quality of life. This means that early diagnosis and treatment of rheumatoid arthritis is extremely important, and this is where the European League Against Rheumatism (EULAR) comes in. This is a European organisation that encompasses healthcare professionals, scientists and patients affected by rheumatic diseases. In 2017 they launched a campaign called ‘Don’t Delay Connect Today’, which aims to raise awareness about the most common symptoms – extreme mental and physical exhaustion (otherwise known as fatigue), stiffness and joint pain. Anyone experiencing these symptoms is encouraged to visit their GP as soon as possible, facilitating early diagnosis. It is hoped by educating the public about these symptoms, people will be diagnosed earlier and therefore be much less likely to end up with loss of function to their joints.
Our public engagement team are called Rheumatosphere, and we represent the Glasgow rheumatic and musculoskeletal diseases group. We were awarded funding from EULAR to disseminate the ‘Don’t Delay Connect Today’ campaign in Scotland. In the last 2 years, we have taken this campaign to the rural areas of Scotland where we believe we could capture populations who may not have been able to openly access information about rheumatic diseases. We travelled to the Outer Hebrides and the Scottish Highlands where we events for the public, healthcare professionals and patients. For the public, telling them about the campaign and also trying to bust some of the arthritis myths such as ‘arthritis only happens to old people’, is extremely important. And for patients, it is important for them to hear about the research being conducted to help better understand and treat their disease. We also need to work effectively with the GPs, engaging them in the campaign, as through understanding the importance of early diagnosis, we can better facilitate immediate referral to rheumatology specialists. During the ‘Don’t Delay Connect Today’ campaign, at a patient centred event, we gave short presentations on our PhD projects which have used patient samples collected from all over Scotland. Some of the people in the audience had given a sample and therefore contributed to our work. It was great for people to see the value in their donation and have the opportunity to find out about the current research being undertaken to improve management and understanding of their disease. Following the completion of the campaign, we were thrilled to receive an award from the Medical, Veterinary and Life Sciences college from Glasgow University for our take on this important campaign. Disseminating the information to people happy to hear it enough for us, but for others in our institution to recognise that too was great!
Reaching isolated populations wasn’t the only benefit of delivering public engagement to rural communities. Academics have a lot of experience talking about their research to other experts in the field; however, it is a different skill to explain complex ideas to the public. Nevertheless, it is very useful to learn, considering many funding bodies require an easily understandable ‘lay’ abstract in grant proposals. Additionally, academic outputs are now being measured not only by traditional outputs, such as publication in peer-reviewed journals, but also against the quality of the impact the research has, which can be achieved through public engagement, and ultimately affect future funding. Given the majority of research is publicly funded, it only seems fair to feed-back to the taxpayers regarding the research their money is funding. Discussion with the general public surrounding your research can also be beneficial as they help to review this from an independent and objective point of view. We have found our public engagement efforts have even influenced healthcare professional’s understanding of how debilitating rheumatoid arthritis is. For example, when an occupational therapist used our gloves used to simulate the stiffness of rheumatoid arthritis in the hands, she was shocked by the difficulty of movement. She said she would now have an appreciation of this when asking patients to do tasks such as signing their name.
On a selfish note, we find public engagement massively motivating. Countless times we have had the general public and patients thank us for choosing to work in healthcare research, which sometimes can be challenging. Having someone say “that is amazing, well done and thank you,” can be just as motivating as any academic achievement we may make.
How to Deliver Public Engagement
If you are now feeling inspired to set up your own public engagement activity and make your science accessible to everyone, we have outlined a few simple steps to help you deliver an engaging and rewarding experience for yourself and the public. Public engagement should be made fun for all by designing interactive and educational activities that draw in the audience. Most importantly, concentrate on the message you want to deliver, keeping it simple and to the point. Rheumatosphere have designed activities to portray complex concepts; for example, a precision medicine game to group the general public using their genetic characteristics, such as the ability to roll their tongue or taste bitterness. If possible, collecting metrics on the impact of public engagement will allow you to develop and design future events. The knowledge of the public you interact with should be measured before and after the event, for example via a questionnaire. Ideally this would be at least a month after the event to measure long-term impact, however, as this isn’t always possible, an interactive test or game to end the activity is also a good approach. After all this preparation you want to make sure the event is well attended by the target audience. Social media is a fantastic way to share your events, alongside traditional methods such as newspaper adverts. Particularly for beginners, you can bring your engagement activities to pre-organised, well-attended events such as Exploration2, Science Centre lates3 or Science Sunday4 all of which offer support in delivering such activities by well versed and helpful teams.
Campaigns like ‘Don’t Delay Connect Today’ have made it possible for people, no matter their geographical location, to hear about the fantastic research being carried out in Glasgow, but more importantly, they share the essential message of early diagnosis through symptom recognition in achieving better outcomes for those with these conditions. As rheumatic diseases can affect anyone, at anytime, and in any geographical location, it is our responsibility to make sure that this message is spread as widely as possible.
This article waspecialist edited by Caitlin McManus and copy-edited by Emily May Armstrong.
References
- https://www.publicengagement.ac.uk/about-engagement/what-public-engagement
- https://www.explorathon.co.uk/glasgow/
- https://www.glasgowsciencecentre.org/discover/adult-events/science-lates
- https://www.gla.ac.uk/events/sciencefestival/glasgowsciencefestival2018/allages/headline_325742_en.html