Tag: Patient & Public Involvement

“How patients at different stages of the steroid weaning process helped to shape and design my research”

This entry is part [part not set] of 1 in the series Case studies

In conversation with: Dr Katharine Lazarus, Diabetes and Endocrine Registrar and Clinical Research Fellow, working within the Section of Endocrinology and Investigative Medicine, Department of Metabolism, Digestion and Reproduction, Imperial College London

What is your research project about and what stage are you at?

Steroid tablets, such as prednisolone are widely used to treat conditions such as asthma and arthritis. One in six people take steroids at any one time and one in 50 adults (approximately 1 million in the UK) take steroids for a prolonged period. 

Involving women to help shape a project exploring pregnancy care following weight-loss surgery

This entry is part [part not set] of 1 in the series Case studies

In conversation with: Dr Saleem Ansari, Registrar in Metabolic Medicine and Chemical Pathology, working within the Department of Metabolism, Digestion and Reproduction, imperial College London

What is your research project about and what stage are you at?

My research aims to answer the question ‘What is the preferred weight-loss operation for women with obesity who are of child-bearing age.’

There are two main weight loss-operations, the ‘gastric bypass ‘and sleeve gastrectomy’. The gastric bypass operation is associated with complications during pregnancy such as early delivery and small babies, but whether these complications occur after sleeve gastrectomy is currently unknown.

Involving parents and carers in research about children’s healthcare experiences during covid-19

This entry is part [part not set] of 1 in the series Case studies

In conversation with: Dr Kimberley Foley , a Postdoctoral Research Associate working within the Child Health Unit, Department of Primary Care and Public Health. Imperial College London

What did you do?

We invited parents and carers to a 2-hour online forum to share their experiences of accessing healthcare services for their children during the Covid-19 lockdown. Our research uses anonymised patient data collected from GP practices from the Clinical Practice Research Datalink in the UK. Our work is specifically looking at the number of times children and young people contacted their GP (in March to June 2020) compared to previous years.

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

This entry is part [part not set] of 1 in the series Case studies

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.

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

This entry is part [part not set] of 1 in the series Case studies

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.

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 1 in the series Case studiesThis 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.

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

This entry is part [part not set] of 1 in the series Case studies

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.