Crohn’s Disease and Ulcerative Colitis are the two main forms of inflammatory bowel disease (IBD) and affect more than 300,000 people in the UK. To mark world IBD day, Kapil Sahnan (surgical trainee) and Mark Samaan (gastroenterology trainee) organised and ran a National Patient and Public Involvement (PPI) Research Day for patients with inflammatory bowel disease.
They worked with a team of PPI experts including: Ailsa Hart (UK PPI lead for Gastroenterology), Christine Norton (Professor of Nursing), Nicola Fearnhead (President in waiting of the ACPGBI), Phil Tozer (an academic colorectal surgeon) and two fantastic expert patients (Azmina Verjee and Sue Blackwell). The conference was attended by 80 patients and 30 researchers from around the country!
At the 2018 Imperial Festival we opened the Patient and Public Involvement (PPI) Café for the first time. A new PPI methodology – a hybrid between a science café and a more typical PPI workshop – it was designed by five Imperial research centres in partnership with Patient and Public members.
Our aim was simple: to give the public a flavour of PPI by contributing to real-life research projects. As well as getting fresh public input into some projects, we wanted to try something novel in PPI and to have some fun.
Why a café?
Despite their modern association with tax-dodging and precarious labour, coffee houses have for centuries been associated with free discussion and the exchange of ideas. We wanted to set up a café that would make for a welcoming environment in which people felt able to discuss research openly. Cafés also have a degree of universality, meaning that in future we could apply the concept across different sites and diverse audiences.
Calls are now open for contributions to the 2018 Engage Conference. We hear from Nathan Green and Denise Sime who presented at last year’s conference. They discuss their experience of sharing their learnings on LoL-Lab, a co-created comedy event between Imperial researchers and the public. If you would like to apply to be part of this year’s conference, get in touch with us at firstname.lastname@example.org for support with an application.
What is the Engage conference?
Nathan: The National Coordinating Centre for Public Engagement (NCCPE) annual conference, Engage 2017, was held over two days in December in Bristol. We saw presenting at this workshop as a fantastic opportunity to share lessons from our own public engagement experience. Our workshop was titled ‘LoL-Lab: Patient and public involvement via science stand-up comedy’.
Denise: The theme of the 2017 Engage Conference was: “Exploring Collaboration”. For me, the title said it all – a collaboration between scientists and non-scientists. The conference brought together researchers from various universities all around the United Kingdom and members of the public who are interested in engaging with Higher Education institutes.
What did you do at the conference?
Nathan: We were scheduled for the second day of the conference, alongside sessions such as ‘the dynamics of co-production’ and ‘responsible research and innovation’. We advertised the session as a workshop on how to successfully incorporate comedy techniques and ideas in science communication. We aimed to involve the audience so that they could get a feel for doing science comedy and gain the confidence to do it themselves.
The workshop was co-led by myself and Denise, a member of the public involved in LoL-Lab. Throughout the workshop Denise acted as the perfect bridge between the academic (me) and the participants.
So how did it go? How did you manage to fit Star Wars into the workshop?!
Nathan: After introductions we went straight into the comedy by recreating some of the idea and joke generating exercises. The first exercise was to demonstrate how specific attitudes and unpredictability can lead to humour. Three people sat in a row facing forward at the front of the room. One person starts to tell a story and the next person continues telling it but with a different emotion, such as angry, happy, resigned, or confused. We ended-up with a very unusual recounting of a holiday!
A second exercise encouraged them to take alternative perspectives on something otherwise familiar, such as film storylines. Participants had to describe a film in one sentence, from the point of view of an alien or a child and everyone had to guess the film. Star Wars has never sounded so peculiar.
Finally, we discussed the PPI elements of Lol-Lab. For the Lol-Lab project the members of the public were important to the creation of the final event by providing a sounding-board for ideas about how to make research understandable and funny.
What did the participants learn from your session?
Denise: Towards the end of the workshop attendees were interested in questions such as: How did I get involved in Public Engagement with Imperial College? What are the methods of recruitment used by Imperial College?
Nathan: The participants were really interested in how we recruited members of the public to take part. How did they find out? What motivated them to take part? It seems this is something that everyone can find challenging and lessons learnt from others can prove valuable. As making PPI accessible to as many people as possible is so important the process by which members of the public are recruited still needs to be improved. The most successful strategies for recruitment were to target particular networks, and invite them individually, such as the local sixth form college or the community centre, rather than a general poster campaign.
Be honest – did you make people laugh?
Nathan: We finished by showing a few videos of stand-up comedy sketches from the final event. I was happy not to perform them live…
And would you do it again?
Denise: I am very delighted that I attended the 2017 Engage Conference and co-delivered the workshop alongside one of the scientists at Imperial College. I believe that it is a good initiative to encourage collaboration between scientists and non- scientists. I would like to attend this year’s Engage Conference if I am invited.
Nathan: I was pleased to have done the event. There was a lot of interest and I’m looking forward to hearing about similar activities in the future. I learnt that there is enthusiasm and motivation for trying out new ways to engage with the public. The conference was personally very interesting as something very different to a statistics conference that I’m used to. Discussion in the sessions was encouraged and there was a lot of variety. There were lots of high-level themed sessions on how public engagement is viewed, facilitated and promoted at institution and national levels. However, I was most interested in hearing about case studies of successful and creative projects and the difference that they can make to people.
Nathan Green is a Statistician and Mathematical Modeller Research Fellow in the Department of Infectious Disease Epidemiology. He is also involved with the Statistics, Modelling and Economics Department at Public Health England.
Denise Sime is a non- scientist member of the Public Panel within the Health Protection Research Unit in Modelling Methodology.
Elspeth Mathie discusses her recent study on the importance of giving feedback to the public in PPI.
Are members of the public wasting their time?
It is widely accepted that Patient and Public Involvement is beneficial for health research. However, imagine spending time giving your opinion and never getting any feedback. Some members of the public ask “am I wasting my time”? Many PPI contributors (lay members, service users, patients, members of the public) say that they contribute to the design of research studies but do not hear if their comments get to the researcher, are useful or make any difference to the research. The idea for our research study came from PPI contributors and PPI leads in the East of England and was funded by the Collaboration for Leadership in Applied Health Research and Care (CLAHRC EoE). We designed a study to examine the variation, types, importance of, and satisfaction with feedback given by researchers to PPI contributors. We carried out an online survey amongst six PPI groups in the East of England, interviews and an audit.
In conversation with: Thibaut Jombart, Lecturer in Genetic Analysis
Working within: HPRU (Modelling Methodology)
What did you do?
I organised a hackathon (i.e. a coding workshop) called ‘Hackout 3’, which was funded by the Medical Research Council (MRC) and Health Protection Research Unit (HPRU). The event brought together epidemiologists, stakeholders from public health institutions, and members of the public (professional computer programmers) to develop new statistical tools for disease outbreak analysis and response.
In this guest blog, Imperial‘s Cathy Thomas offers advice on how to use social media to engage (and involve!) the public in your research. What have your experiences with using social media for engagement been? Share your experiences in the comments.
Why bother with social media?
There are over one billion active users on Facebook and over 100 million monthly Instagram users – which means that if you’re looking to connect with members of the public, it’s worth considering how social media and other digital tools could support or enhance your engagement activity.
The useful thing about social media is that it’s a discursive medium that encourages sharing and participation, so rather than simply using it as a tool to promote what you’re doing, there will be ways in which it can support two-way engagement. What’s more, it’s measurable too.
Find out how Imperial researchers can engage the public in their work at QPR’s annual Community Day.