Tag: Designing & Managing

Involving teenagers in research about the environment and mental health

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In conversation with: Rhiannon Thompson, PhD student working within the Imperial College Department of Epidemiology and Biostatistics and the SCAMP study

What did you do? 

As part of my PhD project, I wanted to find out more about how adolescents are affected by their physical environments (their thoughts and feelings about urban and rural places, buildings and traffic, greenspace, nature, noise, etc). To begin with, I recruited 12 teenagers for a project design workshop where we brainstormed ideas for how this question could be answered.

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

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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.

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.

Involving women in the design of maternal cardiovascular research

This entry is part [part not set] of 0 in the series Case studiesThis entry is part 2 of 5 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 #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.

Case Study #10: An interactive PPIE workshop on kidney transplant rejection

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We are delighted to announce the NIHR Imperial BRC PPI Grant Scheme is now open until Friday 19 October 2018, 5pm. The purpose of this grant scheme is to support motivated researchers and their teams to undertake meaningful and impactful public and patient involvement that will shape their research and enhance the translation of biomedical research from bench to bedside. As this is our fourth round of funding, we spoke with Dr Candice Roufosse, Senior Clinical Lecturer at the Centre for Inflammatory Diseases about how winning a PPI Grant helped improve their research.

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

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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).