‘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.
By Dale Weston, Research Fellow, NIHR Health Protection Research Unit (Modelling Methodology) (HPRU(MM))
What did you do?
Our project was a Patient and Public Involvement group with 8 members of the public, attending a half-day workshop. First, they provided input on a systematic literature review drafted by a member of the research team entitled “Human Behaviour and Infectious Disease Modelling: A Scoping Review of the Literature and Recommendations for the Future”. The members of the public were sent the draft systematic review to read ahead of the workshop together with a useful guide to reading a scientific paper.
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.
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.
The Imperial NHS Quality Improvement team used a “community organizing approach” to run a Listening Campaign, Dec – Apr 2018. This helped them to develop their 2018-2023 Quality Strategy. Phoebe Rutherford explains how they went about it. You can hear more about their approach at their upcoming inaugural Share and Spread Improvement event.
What did you do?
We used a community organizing approach to lead a listening campaign in North West London to help shape our new Quality Strategy for 2018 – 2023. Between December and April 2018, we had around 1,000 conversations with staff, patients and community groups.
In conversation with: Camarie Welgemoed, Honorary Clinical Research Fellow and part-time PhD, currently working as Breast Specialist Superintendent in radiotherapy.
Working within: Radiotherapy at Charing Cross hospital, doing a PhD in the Department of Surgery and Cancer.
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).
In conversation with: Thibaut Jombart, Lecturer in Genetic Analysis
Working within: HPRU (Modelling Methodology)
What did you do?
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.