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!
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.
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. Group members have also helped in constructing lay summaries for several (successful) grant applications, and input into the creation of a short video as part of a recent $5 million grant application. (more…)
It was a primary aim of our NIHR Health Protection Research Unit (HPRU) in Respiratory Infections to seek meaningful patient and public input in our three research areas: Influenza, Tuberculosis and Other Acute Respiratory Infections. Therefore, we appointed two patient representatives (for Flu and Tuberculosis) who were invited to our key strategic and public meetings.
Additional to that, in January 2017, we set up a panel of patients and members of the public who either had experience of respiratory conditions or were interested in our three research areas. We meet between two and three times a year for two hours where they helped us to identify, plan and design our research within the themes listed above.
Our team (Raheelah Ahmad, Tim Rawson, Enrique Castro-Sánchez, Esmita Charani, Luke Moore and Alison Holmes) set out to explore if and how citizens would be willing to take part in setting priorities for research funding. (more…)
The Healthy Start, Happy Start (HSHS) study aims to help parents better understand their child’s communication and behaviour, and to learn different ways of reacting. We set up a Study Advisory Group (SAG) and asked them for ideas on participant recruitment and materials. The group has developed over time to also consider how to explain different parts of the research to participants and how to best keep participants engaged.
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.
‘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.