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).
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.
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.
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.
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.
Public involvement in health and biomedical research is increasingly seen as both desirable and necessary. Desirable because the public’s vast and varied experience can bring important perspectives to research. Necessary because many funders now require it.
That’s why we’ve developed the Patient and Public Involvement (PPI) Resource Hub – to guide researchers through the process of actively involving patients and members of the public in their research and projects.
What did you do?
With the help of the NIHR Imperial BRC PPI award, we were able to set up a Patient and Public Involvement (PPI) group to help shape our preterm birth research at Imperial. The funding enabled us to invite 10–15 participants to three PPI meetings over a course of 12 months. We now have an established group with around seven core members and one nominated representative. The meetings have been a great way to present, and get feedback, on our current and future research plans.