Blog posts

Case study #17: ITP – Immune Thrombocytopenia or Involve The Patient!

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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!

Case study #16: Frontiers in Cystinuria Research – Learning from patient experience to inform precision medicine research

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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.

Four views on co-production

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.

Case study #15: ‘MatImms’ involve women in research addressing low maternal vaccination uptake

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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.

Case study #14: Public involvement in research that is less “public facing” – PPI and Mathematical Modelling

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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.

9 things I have learnt about Public Involvement – A service user’s perspective

By Philippa Russell

I am a recent mature graduate from London South Bank University, where I studied a degree in ‘Health and Social Care: Administration & Management’. Over the years I’ve managed to accumulate vast lived experience from being a service user in healthcare, both as a patient and family member. I have written about what having a brain injury has taught me here.

As part of my course I had a placement with the Patient Experience Research Centre (PERC) at Imperial College London, who promote participatory approaches to healthcare and biomedical research. They advise and support researchers at Imperial to do PPI (that is Patient and Public Involvement, not payment protection insurance!)