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?”
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.
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. Recurrent wheeze is influenced by genetic vulnerability, respiratory infections, and air quality, but can be prevented with timely healthcare after the first wheeze attack.
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 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.