Tag: Patient & Public Involvement

Involving women to design and develop research into early-onset pre-eclampsia

In conversation with Olive Adams, Patient and Public Involvement (PPI) Midwife working with Professor Christoph Lees and the research team based at the Centre for fetal care at Imperial Healthcare Trust and Women’s Health Research Centre at Imperial College London.

How would you describe your role as a Patient and Public Involvement (PPI) Midwife? 

My role as PPI midwife was specifically developed to ensure high quality public involvement activity was undertaken across all of Professor Lees upcoming projects within the Women’s Health Research Centre, including enabling involvement at the very  earliest stage of each study.

I had some experience of undertaking PPI activity as a research midwife which has helped me to undertake this role (see my previous PERC blog post outlining my previous public involvement activity here).

Designing follow-up care for stroke with those who know it best

In conversation with: Jennifer Crow, Clinical Specialist Occupational Therapist in Stroke who is undertaking a NIHR Pre-doctoral Clinical Academic Fellowship programme working within: Therapies/Stroke at Charing Cross Hospital, London

Jenny’s pre-doctoral fellowship is a partnership fellowship funded by the Stroke Association and the National Institute for Health Research.

What did you do? 

I ran my first virtual Patient Public Involvement Group via zoom with 6 attendees. I had previously been involved in public engagement activities in the form of patient stories and feedback but I had not attempted public involvement. I am in the process of developing a follow-up programme of care for people who have had minor strokes.

What we learnt developing MatImms – a maternal immunisation smartphone app

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.

Achieving more through public involvement in antimicrobial stewardship

This entry is part 1 of 5 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. 

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

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

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.

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

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.