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.
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.
Readers of this blog will be familiar with Patient and Public Involvement in a research setting. But what does PPI look like within health care services? Here Imperial NHS Trust Lay Partners Mariam Mohammed and John Norton share their perspectives.
What did you do?
We secured a £1,000 grant from the British Society for Immunology to develop an animated film about latent tuberculosis (TB) infection, which was matched by funding from the NIHR Health Protection Research Unit (HPRU) in Respiratory Infections. So together with my colleagues, Mica Tolosa-Wright and Ishita Marwah, we developed the script and initial version of the film over a period of about 3 months (Feb–April 2017).
What did you do?
‘LOL-lab’ was a collaboration between Imperial scientists and the public. We created and hosted a public ‘science comedy’ event, which was developed jointly with members of the public. LOL-lab was designed to celebrate and share scientific achievements.
We aimed to connect researchers (i.e. biologists, epidemiologists, and mathematicians) with the public through light-hearted, plain-speaking 10-minute talks at an informal stand-up comedy evening event hosted by a professional comedian.