Patient Experience Research Centre

Reflections on developing and running a Science Café at the Cancer Research UK Imperial Centre

10 January 2022

Kelly Gleason, Lead Nurse at the Cancer Research UK Imperial Centre shares her reflections on starting and running a Science Café; a safe space to bring together researchers, clinicians and members of the public to learn and share knowledge about cancer research

How it all started?

In 2010 I attended the International Association of Clinical Research Conference in the USA. That year, the keynote speaker, Mr Charles Sabine, gave a very powerful and emotive talk about Huntington’s disease and the importance of research in this area.

Mr Sabine had lost his father to Huntington’s disease; his brother was in the advanced stages of the illness and he himself had chosen to have genetic testing to find that he too carried the gene for Huntington’s.

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

Halle Johnson

19 July 2021

This entry is part [part not set] of 0 in the series Case studies

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 women to design and develop research into early-onset pre-eclampsia

Halle Johnson

9 July 2021

This entry is part [part not set] of 0 in the series Case studies

In conversation with Olive Adams, Patient and Public Involvement (PPI) Midwife working with Professor Christoph Lees and the research team based at the Centre for fetal care at Imperial Healthcare Trust and Women’s Health Research Centre at Imperial College London.

How would you describe your role as a Patient and Public Involvement (PPI) Midwife?

My role as PPI midwife was specifically developed to ensure high quality public involvement activity was undertaken across all of Professor Lees upcoming projects within the Women’s Health Research Centre, including enabling involvement at the very earliest stage of each study.

Using Twitter to raise awareness of responsible health data use: Our reflections of being involved in a Data Saves Lives’ Tweet Chat

Halle Johnson

16 June 2021

John Norton, Public Contributor and Halle Johnson, Public Involvement Officer at Imperial Patient Experience Research Centre reflect on their recent experience of participating in a tweet chat aiming to raise awareness and increase public understanding of the benefits of responsible health data sharing to improve health outcomes.

On the 27th of April 2021, Data Saves Lives (a multi-stakeholder initiative led by the European Patients’ Forum and the European Institute for Innovation through Health Data) held a live tweet chat which posed the question: “How can we manage the tension between individual privacy rights and the wider societal good of health data use?”

Four reasons why my placement at the Patient Experience Research Centre (PERC) has been beneficial for my PhD

Halle Johnson

7 June 2021

My name is Carmel McGrath, and I am in the final year of my PhD at the University of Southampton. My research is exploring the impacts of Public Involvement. In July 2020, I started a virtual placement at the National Institute for Health Research (NIHR) Imperial Biomedical Research Centre (BRC) following a successful application for the NIHR Short Placement Award for Research Collaboration (SPARC) scheme. These awards aim to promote collaborations across Biomedical Research Centres so early career researchers can network, train in a specific skill or collaborate with other researchers/specialist outside of their own centres.

I have now completed my placement and would like to share my experiences in three separate blog posts.

Involving parents to inform research into pre-school wheeze

Halle Johnson

24 May 2021

This entry is part [part not set] of 0 in the series Case studies

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

What is your research about?

Our research explores pre-school wheeze. A third of preschool-aged (1-5 years) children experience wheeze, making them cough and/or have breathing difficulties. The number of preschool children in the United Kingdom (UK) who suffer or die from wheeze attacks is higher compared to that in other European countries. Recurrent wheeze can last throughout childhood and be an indication that the child will develop asthma.

Involving teenagers in research about the environment and mental health

Maria Piggin

17 May 2021

This entry is part [part not set] of 0 in the series Case studies

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.

Designing follow-up care for stroke with those who know it best

Maria Piggin

30 March 2021

This entry is part [part not set] of 0 in the series Case studies

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.

You and your hormones: engaging and educating the public about endocrinology

Halle Johnson

22 March 2021

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.

Are the statistics from Covid-19 vaccine trials understood?

Halle Johnson

4 March 2021

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).

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