To celebrate continued public involvement in research during the coronavirus (COVID-19) outbreak, the NIHR Centre for Engagement and Dissemination asked organisations and research groups to share their stories. These will then be showcased as narrative Twitter threads @NIHRinvolvement channel from 13-17 July, alongside questions and polls, to encourage a week of discussion and learning around the public involvement during the outbreak.
We responded with two stories, one on how we first launched our COVID-19 community involvement activity, and the other on how we’ve involved the public in Imperial’s REACT study – a major programme of research seeking to improve our understanding of how COVID-19 is spreading across England.
CRUK Senior Research Nurse, Kelly Gleason, shares how one patient’s vision continues to inspire her, and influence how we involve and engage the public in healthcare and research design at Imperial.
Sunday evening, November 14th 2014, we stood in the dark on Exhibition Road, staring through the large glass windows into the main entrance of Imperial College London. There stood twenty-four portraits, assembled as six pillars, ready to tell their story. A woman in a black dress sitting on an aluminium step stool wearing a carnival headdress, a man in leathers on a motorcycle, a toddler in her dad’s arms gesturing a story with her hands, these were the people keeping Rina Dave alive.
This entry is part 4 of 5 in the series PPI Awards: Round 4 Reports
In conversation with: Dr Martina Di Simplicio, Clinical Senior Lecturer in Psychiatry, and Rachel Rodrigues, PhD Student. Working within the Mood Instability Research Group, Centre for Psychiatry, Department of Medicine, Imperial College London.
What did you do?
Our research project called iMAGine looks at the psychological processes contributing to maintenance of self-harm behaviour in young people, including whether aspects of ‘reward’ or positive reinforcement underlie self-harm. From the very start of the study, we’ve been collaborating with a group of six young people (17 to 25-year-olds) with and without experience of self-harm.
By Philippa Russell
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!)
By Professor Helen Ward
Director, Imperial Patient Experience Research Centre
Imperial Patient Experience Research Centre, aka PERC, started blogging about 18 months ago with this Welcome to our Blog post. The blog was set up to “share the latest learnings and news from the PPI community, points of views from the team on the advances and issues of public involvement, case studies of good involvement practice to inspire new ideas, and a whole host of other top tips and personal pointers”.
Since then we’ve published 25 blogs, ranging from case studies of good practice and opinion pieces, through to notices about events, training, and top tips for applicants for our grants scheme.
To celebrate National Co-production Week, we sat down with Rosina Malagrida (Head of the Living Lab for Health at IrsiCaixa, Barcelona) to discuss ‘Responsible Research and Innovation’ and what the U.K. can learn from the European example.
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.
Biomedical Engineer Shruti Turner reflects on the recent CRISH (Co-creating Innovative Solutions in Health) course and explains that engineers could learn a lot from PPI.