Category: Case studies

Involving teenagers in research about the environment and mental health

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. Then, two of the attendees reviewed some draft documents: recruitment advert, participant information sheet and consent form.

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.

How women with experience of miscarriage helped shape and design my research

In conversation with: Dr Bijal Patel, Diabetes and Endocrinology Research Registrar, Department of Metabolism, Digestion and Reproduction, Imperial College London

Project Details

My research aims to improve the diagnosis of miscarriage. Miscarriage currently takes several weeks to diagnose, resulting in significant psychological trauma for women and their families.

Levels of a hormone produced by the placenta, called ‘kisspeptin’, can be used to estimate the risk of miscarriage with a high degree of accuracy. The current method to measure kisspeptin levels in the blood takes several days to provide results and cannot be easily conducted in other centres. Therefore, my project aims to develop a new method that can accurately measure kisspeptin levels and thus enable the use of this blood test in the assessment of women with possible miscarriage across the NHS.

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

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

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.

I felt that it was important to speak to individuals who had previously taken part in this type of research to discuss my proposed ideas and to gather their feedback.

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

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.

What’s New and Promising in Neuropathic Pain Research? Involving Patients in Research Co-Design

This entry is part 5 of 5 in the series PPI Awards: Round 4 Reports

In conversation with: Donna Kennedy, Clinical Specialist Hand Therapy (Imperial College Healthcare NHS Trust) and Postdoctoral Research Fellow (NIHR Imperial Biomedical Research Centre). Working in collaboration with Prof. Andrew Rice, Dr Harriet Kemp and Dr Whitney Scott within the Pain Research Group led by Prof. Andrew Rice.

What did you do?

The Pain Research Group investigates neuropathic pain in the context of infectious diseases, diabetes and nerve trauma. We undertake patient profiling studies, which include cognitive, psychological and physical measures such as skin biopsies and quantitative sensory testing.

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

This 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.

Public involvement in prematurity research at Imperial Women’s Health Research Centre

This entry is part 3 of 5 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.

Involving women in the design of maternal cardiovascular research

This 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).