We’re the Imperial Patient Experience Research Centre team, otherwise known as PERC. And we’re dedicated to improving the quality and impact of healthcare and translational research by promoting and supporting active communication between patients, the public, researchers and clinical staff.
This entry is part 2 of 2 in the series PPI Awards: Round 4 Reports
In conversation with: Olive Adams, Research Midwife
Working within: Centre for Fetal Care (NIHR Imperial BRC Theme: Maternity Cardiovascular)
What did you do?
Our research department, the Centre for Fetal Care, undertakes studies on maternal cardiovascular health and other conditions in pregnancy at Imperial and with European collaborators.
We formed a group of women who were either affected by conditions addressed in our research or who were in the pre-conception period (the weeks or months when a woman or couple decides to have a child). We wanted the group to meet quarterly and to give us their views on the research taking place in our department.
This entry is part 1 of 2 in the series PPI Awards: Round 4 Reports
In conversation with: Dr Monsey McLeod, Lead Pharmacist Medication Safety and Anti-infectives Research and Dr Anne Campbell, Research Associate at National Institute for Health Research Health Protection Research Unit (NIHR HPRU) in Healthcare Associated Infection and Antimicrobial Resistance at Imperial College London.
What did you do?
Antimicrobial resistance is a key threat to patient safety and a major driver is antibiotic use. In the UK, general practitioners (GPs) prescribe approximately 75% of all antibiotics. Under 20% of these prescriptions will benefit patients, but they all increase the number of microbes that are resistant to antibiotics, and can cause side-effects.
Dr Alice Hart, Clinical Research Fellow, Immune Haematology, Centre for Haematology
Twenty-eight people attended our patient involvement event sponsored by the Imperial Biomedical Research Centre (BRC) PPI grant scheme at the Hilton hotel. This included eight patients (aged 2-16) with Immune Thrombocytopenia (ITP), their parents/siblings and members of the non-malignant haematology research group – doctors, scientists, clinical nurses, research nurses and a research coordinator.
We started with a science entertainer doing fun experiments, like making dry ice bubbles, with the children to set the ball rolling. The children really enjoyed it – two told us they want to be scientists when they grow up!
Maria Piggin from the NIHR Imperial BRC Patient Experience Research Centre shares her experiences of running a co-production training course.
Dr Toby Athersuch, Lecturer, Phenome Centre
‘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.
The recent event “Co-producing research: How do we share power?” aimed to share experiences and provide practical examples of how power can be shared in a co-produced project. Co-producing a research project is an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge (INVOLVE – Guidance on co-producing a research project).
Ninety-three patients, carers, researchers and public involvement leads attended the event. In this blog, four people share their experience of the event: John and Rebecca who spoke at the event about their experiences on a project; Anna and Erica as attendees.
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 Lidia Luna Puerta (@L_Luna_P)
Over the last 20 years, Singapore has become a medical research hub with global reach. The current focus is placed on translational research to close the gap between basic clinical research and patient care. Despite the growing worldwide adoption of public involvement in research, the role of Singaporeans in research is still limited.
I am a third year PhD Candidate at the Lee Kong Chian School of Medicine, Nanyang Technological University (NTU) in Singapore, exploring the potential for public involvement (PPI) in research in Singapore. Co-supervised by Professor Helen Ward, Director of the Patient Experience Research Centre (PERC), I have been working with PERC to learn from their wide experience in building capacity for public involvement amongst researchers and members of the public.
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. Roundtable discussions were then held concerning any questions, perceptions, thoughts, or concerns that arose in response to the systematic review.
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 hoped to gather the perspectives of patients and their family members on our plans for the design of two clinical trials.