This week we are highlighting an important cause – Dying Matters Awareness Week. Dying Matters is a campaign run by Hospice UK that aims to get us talking more openly about death, dying and bereavement. The focus of this year’s awareness week is on what it means to be #InAGoodPlace when we die. To be in a good place at the end life involves having your physical, emotional, financial and spiritual needs met and getting the right care and support. We can only achieve this if we get people thinking about, and talking through, their wishes for end of life care.
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.
During the COVID-19 pandemic, mathematical modelling has received a lot of attention from policy makers and the general public. Computer models are developed, adapted and refined by humans to do things like making projections or forecasts (i.e., an estimation of a future situation based on present trends).
Computer models are developed, adapted and refined by humans to do things like making projections (i.e., what would the future look like if current trends were to continue?) or forecasts (i.e., what will the future actually look like?). It is interesting to consider how human judgement alone compares against model-based forecasts.
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.
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.