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Public engagement and involvement at the Cardiomyopathy UK conference: When researchers and the public meet

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.

“How patients at different stages of the steroid weaning process helped to shape and design my research”

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In conversation with: Dr Katharine Lazarus, Diabetes and Endocrine Registrar and Clinical Research Fellow, working within the Section of Endocrinology and Investigative Medicine, Department of Metabolism, Digestion and Reproduction, Imperial College London

What is your research project about and what stage are you at?

Steroid tablets, such as prednisolone are widely used to treat conditions such as asthma and arthritis. One in six people take steroids at any one time and one in 50 adults (approximately 1 million in the UK) take steroids for a prolonged period. 

Involving parents and carers in research about children’s healthcare experiences during covid-19

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In conversation with: Dr Kimberley Foley , a Postdoctoral Research Associate working within the Child Health Unit, Department of Primary Care and Public Health. Imperial College London

What did you do?

We invited parents and carers to a 2-hour online forum to share their experiences of accessing healthcare services for their children during the Covid-19 lockdown. Our research uses anonymised patient data collected from GP practices from the Clinical Practice Research Datalink in the UK. Our work is specifically looking at the number of times children and young people contacted their GP (in March to June 2020) compared to previous years.

Why has nobody asked us?! Our journey so far to co-produce research.

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In conversation with Dr Helen Skirrow, National Institute Health Research Clinical Doctoral Research Fellow, Child Health Unit, Department of Primary Care and Public Health, School of Public Health, Imperial College London. and Lena Choudary-Salter, Founder and CEO of The Mosaic Community Trust

What is “Why has nobody asked us?” about?

“Why has nobody asked us?” aims to explore families’ experiences and perspectives of childhood vaccinations and is a co-production research project between Dr Helen Skirrow and The Mosaic Community Trust. In the UK, children living in poorer areas of big cities like London who belong to ethnic minorities or who do not speak English at home are less likely to be vaccinated however in previous research the voices of these families have often been missing.

Involving Year One students to help shape research into physical activity and child health

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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 is your research about and what did you do?

Our research is the iMprOVE cohort study which is investigating children’s physical activity and mental health in primary schools that do and do not implement physical activity interventions. Regular physical activity is known to have many health benefits but only half of children in England meet the recommended guidelines of 60 minutes of physical activity per day.

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.