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: 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.
This World Health Day, Alison Perry shares her experiences as a research midwife returning to the front line of clinical care during the COVID-19 outbreak. #SupportNursesAndMidwives
My name is Alison and I’m the Lead Research Midwife and manager of the Women’s Health Research Centre at Imperial College. My work is at the intersection of health and science and COVID-19 has hit this space like a bolt.
I lead a team of research clinicians (including many midwives) and support a portfolio of clinical research related to reproductive health and childbirth. Since the outbreak, most of that research is on hold.
This World Health Day, Jane Bruton reflects on her time as an HIV nurse during the early years of the HIV pandemic, and shares observations relevant to the COVID-19 outbreak today. #SupportNursesAndMidwives
2020 is the International Year of the Nurse and Midwife and this year’s World Health Day (7 April 2020) celebrates the role that these professions play in keeping the world healthy. Both nurses and midwives are at the forefront of the COVID-19 response. And every day, as I read the experiences of nurses on the front line, it takes me back to my time on the ward.
In 1981, thirty-nine years ago, I qualified as a registered nurse in the UK.
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.
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.
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.
To kick off the Autumn series of our ‘Health Research Matters’ lunchtime seminar series, we brought together two speakers to share their experience of co-production with young people:
- Dr Christina Atchison, talked about ‘Adolescents 360‘, a project that used human-centred design to co-produce context-specific reproductive health programming initiatives with adolescents in Ethiopia, Nigeria and Tanzania; and
- Matt Walsham, from Partnership for Young London, who shared insight into working with young people on research across the voluntary sector
In case you weren’t able to attend, and as a reminder for those who did, here are some of the key take home messages from the two presentations, followed by the main discussion points and links to further reading.