Dr Jane Cope (Image credit: NCRI*)
People enrolled in clinical trials are often active partners in research, but this wasn’t always the case. Here Dr Jane Cope, former Director of the National Cancer Research Institute and an MRC staff member for more than 30 years, looks back on how patients have changed from passive subjects to active partners in clinical trials.
In the early 2000s, when working at the MRC Clinical Trials Unit, I took a call from a man who rather gruffly enquired about our guinea pig research. Animal activists had been in the news, so I told him rather curtly that we weren’t involved in anything like that. Only after I put the phone down did I realise he was probably asking about clinical trials. I should have advised him to talk to his doctor.
This example serves to show how even a decade ago, as a non-clinician involved in research, I was not in touch with how patients talk about trials ― it hadn’t occurred to me at first that ‘guinea pigs’ might mean people. Fifty years ago, in 1964, the MRC published guidelines on ‘Responsibility in Investigations on Human Subjects’. The MRC was a pioneer of clinical trials, but the term ‘human subjects’ now seems dated, if not as offensive as ‘guinea pigs’. Today we talk about ‘involving patients’ and ‘participants’ in trials. And it is not just the language that has changed. Read more
Left: brain cells without HACE1 shrinking and dying, and right, cells high in HACE1.
When Barak Rotblat moved to Canada to start research into childhood cancers, he had no idea that it would lead to insights into Huntington’s disease, one of the most debilitating forms of neurodegeneration. Here he tells us why he’s glad he went against his initial instincts.
As my PhD at Tel Aviv University, Israel, was coming to an end, I was looking around for a lab in which to continue my training. My PhD was in the field of cell signalling ― studying how components within cells interact ― and I knew I wanted to stay in that field.
An opportunity came up with a researcher called Poul Sorensen at the University of British Columbia in Vancouver, Canada. At first I was a bit reluctant. I was mainly interested in how proteins move around in cells, while Poul was a pathologist studying genes involved in childhood cancers. However, when I looked into the project a little closer, I realised that analysing the genes that go wrong in childhood cancers could lead to fundamental understanding of cellular processes that affect all cells.
A few months later I was getting on a plane to Canada. Read more
How can we support older workers?*
What will your working life be like in 30 years? Katie Finch, Programme Manager of the Lifelong Health and Wellbeing (LLHW) scheme, explains how a new model for building research partnerships could help find the answer.
The UK’s workforce is ageing. Recent Government changes to retirement age and state pensions mean that many more of us will be working later into our lives than we might have expected.
But can older people continue to cope with the physical and mental demands of their work? The truth is, we don’t really know; many of the challenges that working in older age will present for both employers and workers are poorly understood.
To tackle this uncharted territory, we needed a new way of working – multidisciplinary research conducted in the real world of employment. Read more