This blog is part of a series showcasing the People’s Research Cafe which took place on the 18th and 19th June 2022 in South Kensington, London as part of the Great Exhibition Road Festival.
What is a People’s Research Café?
The People’s Research Cafe is a café with a twist. Visitors are welcomed to sit down at a table co-hosted by an Imperial College researcher and a public contributor whose role is to help the conversation flow freely. Over a free hot drink, visitors find out about the researcher’s project and will be asked for their opinions on it.
Kelly Gleason, Lead Nurse at the Cancer Research UK Imperial Centre shares her reflections on starting and running a Science Café; a safe space to bring together researchers, clinicians and members of the public to learn and share knowledge about cancer research
How it all started?
In 2010 I attended the International Association of Clinical Research Conference in the USA. That year, the keynote speaker, Mr Charles Sabine, gave a very powerful and emotive talk about Huntington’s disease and the importance of research in this area.
Mr Sabine had lost his father to Huntington’s disease; his brother was in the advanced stages of the illness and he himself had chosen to have genetic testing to find that he too carried the gene for Huntington’s.
The Society for Endocrinology has a long-standing mission to inform the public about hormones and hormone-related conditions. In order to meet this aim, it has formed a ‘Public Engagement Committee’, of which, we are both members. The committee regularly organises outreach activities, including at schools and science communication events, to engage with the public and amplify knowledge about hormones.
In this age of ‘post-truth’ news, the Society for Endocrinology has made a significant investment to provide a reliable and accessible source of information for the public about hormones and the conditions that can transpire when they are not functioning normally.
I am a recent mature graduate from London South Bank University, where I studied a degree in ‘Health and Social Care: Administration & Management’. Over the years I’ve managed to accumulate vast lived experience from being a service user in healthcare, both as a patient and family member. I have written about what having a brain injury has taught me here.
As part of my course I had a placement with the Patient Experience Research Centre (PERC) at Imperial College London, who promote participatory approaches to healthcare and biomedical research. They advise and support researchers at Imperial to do PPI (that is Patient and Public Involvement, not payment protection insurance!)
This entry is part [part not set] of 0 in the series Case studies
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.
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.