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.
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 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.
One of the main pieces of research activity in the group revolves around using Rapid Evaporative Ionisation Mass Spectrometry (REIMS) in the form of the iKnife. This is a surgical diagnostic tool that uses the ‘smoke’ bi-product of surgical diathermy (a widely used alternative to traditional scalpels, where electrically induced heat makes precise cuts to remove unwanted tissue whilst minimising blood loss) for real-time tissue identification.