We’re the Imperial Patient Experience Research Centre team, otherwise known as PERC. And we’re dedicated to improving the quality and impact of healthcare and translational research by promoting and supporting active communication between patients, the public, researchers and clinical staff.
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.
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.
Dr Ali Abbara and Dr Chioma Izzi-Engbeaya from Department of Metabolism, Digestion and Reproduction, Section of Investigative Medicine discuss their public engagement work with the Society for Endocrinology.
The Society for Endocrinology has a long-standing mission to inform the public about hormones and hormone-related conditions. In order to meet this aim, it has formed a ‘Public Engagement Committee’, of which, we are both members. The committee regularly organises outreach activities, including at schools and science communication events, to engage with the public and amplify knowledge about hormones.
In this age of ‘post-truth’ news, the Society for Endocrinology has made a significant investment to provide a reliable and accessible source of information for the public about hormones and the conditions that can transpire when they are not functioning normally.
Dr Suzie Cro, Research Fellow at the Imperial Clinical Trials Unit and the HEALTHY STATS public involvement group share insights from their recent online discussion of COVID-19 vaccines:
Right now, in the UK and across the world, vaccines for Covid-19 are being rolled out. You may have already received, or be expecting a vaccination offer sometime soon. Vaccines are thought to be our main hope to control the Covid-19 pandemic. Their use has only been possible following robust and rigorous clinical trials, which have demonstrated that they meet high safety and effectiveness standards set by the UK medicines regulator (the MHRA).
In conversation with: Dr Bijal Patel, Diabetes and Endocrinology Research Registrar, Department of Metabolism, Digestion and Reproduction, Imperial College London
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.
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.
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.
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.
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.
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.