‘Frontiers in Cystinuria Research’ was an event held last October at Imperial College London. It involved people affected by cystinuria in discussions with expert medical professionals and academic researchers active in this area. The aim of the event was to capture some of these rich patient experiences to inform future precision medicine research, while simultaneously providing a forum for patients to share their insight. We feel that these types of event are important enablers of patient-directed research development, particularly relevant in the context of rare metabolic diseases, where patient input and advocacy is often underrepresented.
By Dr Helen Skirrow, Speciality Registrar, Imperial College Healthcare NHS Trust, London Public Health Medicine Specialist Training Program; Honorary Clinical Research Fellow, School of Public Health, Imperial College London; MatImms Research Team, International Centre Child Health, Paediatrics, School of Medicine.
Our multi-disciplinary research team of midwives, doctors and scientists investigates vaccination in pregnancy (the MatImms project) and is led by Professor Beate Kampmann. MatImms encourages vaccination in pregnancy to protect newborn babies from preventable infections. In the laboratory, MatImms studies the impact of vaccines on immunity in mothers and babies. In order to connect with pregnant women, we developed the MatImms Smartphone App to improve vaccine information available, enabling pregnant women and their support networks to make informed choices.
Lillie Pakzad-Shahabi, Clinical Trial Coordinator, Neuro-oncology, Department of Medicine, Imperial College London
Why did you decide to do Patient and Public Involvement (PPI) in your clinical trial?
After receiving a NIHR Imperial BRC PPI award (Round 3) to run a project with a secondary school, I stumbled across the PERC-ICTU PPI training series at Imperial. These workshops helped me to understand the importance of PPI early in clinical trial design. I decided it would be useful to involve patients from our clinic and their family members to review upcoming clinical trial protocols.
We are delighted to announce the NIHR Imperial BRC PPI Grant Scheme is now open until Friday 19 October 2018, 5pm. The purpose of this grant scheme is to support motivated researchers and their teams to undertake meaningful and impactful public and patient involvement that will shape their research and enhance the translation of biomedical research from bench to bedside. As this is our fourth round of funding, we spoke with Dr Candice Roufosse, Senior Clinical Lecturer at the Centre for Inflammatory Diseases about how winning a PPI Grant helped improve their research.
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).
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.
The hardest thing about submitting a grant application is often not knowing what the judges are looking for. So, with the call now open for this year’s NIHR Imperial BRC Patient and Public Involvement (PPI) grant scheme funding, but the deadline fast approaching, we thought we’d ask both past winners and members of the judging panel to share their thoughts and insights on what makes a winning patient and public involvement proposal…
In conversation with: Raheelah Ahmad, NIHR Knowledge Mobilisation Fellow Working within: NIHR Health Protection Research Unit in Infections and Antimicrobial Resistance
What did you do?
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.
In conversation with: Rachael Ryan, Research Assistant Working within: Centre for Psychiatry, Department of Medicine
What did you do?
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.