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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 Alexander, Clinical Research Fellow in Paediatric Intensive Care at St Mary’s Hospital in London
As a doctor who works in children’s intensive care, I have always been interested in research, especially in research that matters to parents and young children. However, until this year I had never formally taken part in patient and public involvement and engagement (PPIE) activities, but I have learned a great deal from these experiences and am now an enthusiastic advocate!
In this blog post I would like to reflect a little on what I have done, and what I have learned – with all of it being thanks to the amazing members of the public who have taken the time to share their experiences and help me on my research journey.
By Kirsten Bell, Senior Research Fellow in Anthropology, Imperial Patient Experience Research Centre
Imagine you have a heart condition—dilated cardiomyopathy (i.e., an enlarged heart)—that can be kept in remission with various medications. The only catch is that you’ll have to be on those medications for the rest of your life. Or do you? The ‘Therapy withdrawal in REcovered Dilated cardiomyopathy – Heart Failure’ (TRED-HF2) trial aims to explore whether it’s possible to reduce the number of medications patients with dilated cardiomyopathy take, while continuing to maintain remission.
A core impetus for the study, like the TRED-HF study before it, is the concerns patients often express about their medications, and the impact of their pill regimen on their quality of life.
In conversation with Dr Helen Skirrow, Lena Choudary-Salter and Habiba Haque
A recap on our research project
Not enough children in the local area around Church Street, Westminster, London where the Mosaic Community Trust is based get their routine vaccines. We therefore worked together on our project that Lena Choudary-Salter (Mosaic’s CEO) named ‘Why did nobody ask us?!’ to reflect that local parents’ views who live in an area of low vaccine uptake had not previously been listened to. We have written about our partnership working before. Children missing out on their routine vaccines is a problem not just in Church Street but in lots of areas of London and other urban areas of the UK, which are poorer and have more ethnically diverse populations.
In this blog post, Dr Kirsten Bell, Senior Research Fellow in Anthropology in the Patient Experience Research Centre (PERC), Imperial College London, shares reflections from PERC’s participation in the Integrated Care System North West London funded Research Engagement Network roadshows.
In early 2024, the Integrated Care System (ICS) North West London funded a collaboration led by NIHR Applied Research Collaboration (ARC) Northwest London and the Community Voluntary Sector Organisations in the boroughs of Ealing, Hounslow, Brent and Hillingdon to host a series of roadshows at their community centres. The goal of the roadshows was to reach out to people in community settings to talk about research, in the hopes of raising awareness of – and interest in – research amongst a more diverse public.
In this blog post, Dr Kirsten Bell, Senior Research Fellow in Anthropology in the Patient Experience Research Centre, Imperial College London, shares the results of our interactive stall ‘You and Your Health Data’.
This year at the Great Exhibition Road Festival, the Patient Experience Research Centre (PERC) hosted a stall called ‘You and Your Health Data’. Moving beyond routine health data collected by the NHS, we were interested in exploring public attitudes towards sharing health data of different types: research data, data from health apps, and internet browsing data. Each of these types of data either directly or indirectly provide valuable insights into people’s health.
In conversation with: Dr Gemma Clunie, Senior Clinical Academic Speech and Language Therapist working within: Sackler MSK Lab, Surgery & Cancer and PERC Fellow (2024)
What is your research project about and what stage are you at?
Airway stenosis (AS) is a narrowing of the windpipe between throat and lungs. People with AS experience a range of distressing symptoms such as shortness of breath, wheeziness, a hoarse voice and swallowing difficulties. Many patients have complicated surgery to widen their throat and improve their breathing. The picture included below shows one of my PhD research participants immediately after this surgery.
In conversation with: Emily Cooper, Research Associate, Adam Lound, Research Physiotherapist, Patient Experience Research Centre, Imperial College London
What is your research project about and what stage are you at?
This research project is one part of the REal time Assessment of Community Transmission – Long Covid (REACT-LC) study. The project is a qualitative interview study exploring the different experiences of people with long lasting symptoms after having Covid-19. This study builds on our earlier pilot project, which showed how people experienced different symptoms and whether or not they described this as being ‘Long Covid’. The pilot study highlighted the value of recruiting participants from outside of online support groups, to help better understand the range of different people living with long lasting symptoms.
As part of the Imperial Imperial Biomedical Research Centre (BRC)‘s Public Involvement Engagement and Participation Strategy (2022 to 2027) almost 80 Community Partners have been recruited to support the NIHR Imperial BRC through steering groups linked to the Imperial BRC’s 14 Research Themes. Community Partners are people who live, work, study, or receive healthcare in North-West London, and who are passionate about sharing their valuable lived experience to help improve research and the health of the North-West London community.
In conversation with: Dr Bina Ram, Postdoctoral Research Associate working within the Child Health Unit, Department of Primary Care and Public Health, Imperial College London
What did you do?
I am leading the iMprOVE study which is examining physical activity of Year 1 children (aged 5-6 years) in Greater London primary schools. The main aim of the study is to compare differences in children’s physical activity across schools that do and do not implement a school based active mile intervention called (which involves children running or jogging for 15 minutes at least three times a week during the school day), whilst also examining its effect on children’s mental health and educational performance.
In conversation with: James E Moore Jr., Principal Investigator; Alain Vella, Research Engineer; and Arushri Swarup, Research Associate, from the Moore Research Group in the Department of Bioengineering, Imperial College London
What is your research project about and what stage are you at?
We have developed an implant to prevent the onset of breast cancer-related lymphoedema (BCRL). BCRL is an under-represented condition that can occur following lymph node removal for the treatment of breast cancer. When lymph nodes are removed, lymphatic vessels (small vessels that transport fluid out of tissues) are damaged. In approximately 20% of patients this can lead to fluid build-up resulting in a swollen, heavy arm negatively impacting patients’ physical and mental health.