Tag: Public involvement

Involving those with lived experience of Anorexia Nervosa in clinical trial design

This entry is part [part not set] of 0 in the series Case studies

In conversation with: Dr Meg Spriggs (Research Associate) and Hannah Douglass (PhD Candidate),  Centre for Psychedelic Research, Division of Brain Sciences, Imperial College, London

Working in collaboration with:  Dr Kirsty Alderton and Dr Frederico Magalhaes who offered mental health support for these focus groups.

What did you do?

There is a current lack of effective treatments for anorexia nervosa (an eating disorder characterised by weight loss, difficulties maintaining weight, and often a preoccupation with one’s own body weight and shape). With fewer than half of those diagnosed with anorexia making a full recovery, there is a desperate need for new treatment avenues to be explored.

Refining research through public involvement: experiences of an early career researcher

This entry is part [part not set] of 0 in the series Case studies

In conversation with: Dr Lisa Newington, Research Associate

Working in collaboration with Dr Caroline Alexander and Prof Mary Wells at Imperial College Healthcare NHS Trust, NIHR Imperial Biomedical Research Centre (BRC) and Imperial Clinical Academic Training Office

What did you do?

I’m currently developing a project to explore the perceived impacts of participating in healthcare research. Specifically, research that is led by healthcare professionals from outside medicine. This includes nurses, midwives, allied health professionals (such as occupational therapists, physiotherapists, speech and language therapists, dietitians, radiographers) and pharmacists.

Evolving patient involvement: How local support and online resources helped foster patient involvement and improve the robustness of our study results

This entry is part [part not set] of 0 in the series Case studies

In conversation with: Emma Lidington, PROFILES Trial Manager

Working within/Team name: PROFILES Team, Royal Marsden NHS Foundation Trust, The NIHR Biomedical Research Centre (BRC) at The Royal Marsden NHS Foundation Trust and The Institute of Cancer Research

The value of lived experience

Experts have recommended that academics should actively involve patients and the public in every phase of research to meaningfully incorporate the voice of those with lived experience. However, achieving this goal can seem daunting, particularly as an early career researcher. In our project, the level of patient involvement evolved over the course of the study, with the Public Involvement Research Hub and local funding from my institution as huge drivers of that change.

Getting involved in antibody testing studies: Stories from our public panel

To celebrate continued public involvement in research during the coronavirus (COVID-19) outbreak, the NIHR Centre for Engagement and Dissemination asked organisations and research groups to share their stories. These will then be showcased as narrative Twitter threads @NIHRinvolvement channel from 13-17 July, alongside questions and polls, to encourage a week of discussion and learning around the public involvement during the outbreak.

We responded with two stories, one on how we first launched our COVID-19 community involvement activity, and the other on how we’ve involved the public in Imperial’s REACT study – a major programme of research seeking to improve our understanding of how COVID-19 is spreading across England.

‘What makes you feel alive?’ A patient’s question inspires art and science.

CRUK Senior Research Nurse, Kelly Gleason, shares how one patient’s vision continues to inspire her, and influence how we involve and engage the public in healthcare and research design at Imperial.

Sunday evening, November 14th 2014, we stood in the dark on Exhibition Road, staring through the large glass windows into the main entrance of Imperial College London. There stood twenty-four portraits, assembled as six pillars, ready to tell their story. A woman in a black dress sitting on an aluminium step stool wearing a carnival headdress, a man in leathers on a motorcycle, a toddler in her dad’s arms gesturing a story with her hands, these were the people keeping Rina Dave alive. 

The Young People in Psych Research Group: helping scientists iMAGine better research for self-harm

This entry is part [part not set] of 0 in the series Case studiesThis entry is part 4 of 5 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 the Mood Instability Research Group, Centre for Psychiatry, Department of Medicine, Imperial College London.

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.

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!)

PPI meets RRI – what can we learn from the European example?

To celebrate National Co-production Week, we sat down with Rosina Malagrida (Head of the Living Lab for Health at IrsiCaixa, Barcelona) to discuss ‘Responsible Research and Innovation’ and what the U.K. can learn from the European example.

Case Study #9: Inflammatory Bowel Disease (IBD) Patient Involvement in Research Day #IBDPRD

This entry is part [part not set] of 0 in the series Case studies

Crohn’s Disease and Ulcerative Colitis are the two main forms of inflammatory bowel disease (IBD) and affect more than 300,000 people in the UK. To mark world IBD day, Kapil Sahnan (surgical trainee) and Mark Samaan (gastroenterology trainee) organised and ran a National Patient and Public Involvement (PPI) Research Day for patients with inflammatory bowel disease.

They worked with a team of PPI experts including: Ailsa Hart (UK PPI lead for Gastroenterology), Christine Norton (Professor of Nursing), Nicola Fearnhead (President in waiting of the ACPGBI), Phil Tozer (an academic colorectal surgeon) and two fantastic expert patients (Azmina Verjee and Sue Blackwell).