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.
In conversation with: Dr. Beth Holder, Lecturer in Maternal and Fetal Health
Working within the Institute of Reproductive Biology, Department of Metabolism, Digestion and Reproduction, Imperial College London.
What is the MatImms app?
The MatImms app is a free educational smartphone app, which is aimed primarily at pregnant women. The objective of the app is to provide reliable information about vaccinations in pregnancy. This includes background on the immune system and how vaccines work, as well as what vaccines are available and how women can get them. We also included a calendar function, where women can put a vaccine reminder into their phone.
This entry is part 4 of 4 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/Team name: Mood Instability Research Group, Centre for Psychiatry, Department of Medicine.
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.
To kick off the Autumn series of our ‘Health Research Matters’ lunchtime seminar series, we brought together two speakers to share their experience of co-production with young people:
- Dr Christina Atchison, talked about ‘Adolescents 360‘, a project that used human-centred design to co-produce context-specific reproductive health programming initiatives with adolescents in Ethiopia, Nigeria and Tanzania; and
- Matt Walsham, from Partnership for Young London, who shared insight into working with young people on research across the voluntary sector
In case you weren’t able to attend, and as a reminder for those who did, here are some of the key take home messages from the two presentations, followed by the main discussion points and links to further reading.
This entry is part 3 of 4 in the series PPI Awards: Round 4 Reports
In conversation with: Lynne Sykes, Clinical Lecturer; Rachel Akers, Senior Research Midwife; and Malko Adan, Senior Research Midwife
Working within: Prematurity Research, Women’s Health Research Centre at Imperial Institute of Reproductive & Developmental Biology
What did you do?
We held face-to-face meetings with patients who took part in our preterm research project meetings to garner acceptability and opinions for new research techniques. We chose this method because it allowed our patients to share their experiences with others and catch up with the research team, who they saw for a large amount of time during their pregnancy.
This entry is part 2 of 4 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).
This entry is part 1 of 4 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.