Category: Case studies

Case study #20: Public involvement in prematurity research at Imperial Women’s Health Research Centre

This entry is part 3 of 3 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.

Case study #19: Involving women in the design of maternal cardiovascular research

This entry is part 2 of 3 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).

Case study #18: Achieving more through public involvement in antimicrobial stewardship

This entry is part 1 of 3 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 #17: ITP – Immune Thrombocytopenia or Involve The Patient!

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

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.

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.

Case study #12: Using a community organizing approach to develop a Quality Strategy

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.