(Image credit: Flickr/jfcherry)
There has been a lot of discussion lately about the huge benefits that could come from research using patient data, but what does that actually mean? How is the data used, and what’s in it for the patients? We asked Dr Janet Valentine, Head of Public Health and Ageing at the MRC.
What is research using patient data?
You might have heard it described as e-health, big data, health informatics or health record linkage. They all mean more or less the same thing: research using the information held in NHS health records captured every time we visit a doctor or go to hospital. By using these health records, researchers can help identify more effective treatments, monitor drug safety, assess services provided in the NHS and better understand the causes of diseases.
What types of patient data are used?
GP data, such as routine vaccinations, lifestyle information, and the types of illnesses we have had; hospital stays or A&E visits; prenatal data; information on issued prescriptions; results of scans and screens; and registries of diseases like cancer and heart disease. Read more
Andrew Bastawrous, an eye surgeon at the London School of Hygiene and Tropical Medicine, won last year’s Max Perutz Science Writing Award with an article explaining the importance of his research developing smartphone apps for checking eye health. As we launch this year’s competition, Andrew explains what winning the award did for him, and provides a few tips for budding writers.
Andrew with his wife Madeleine and son Lucas (left), and the whole research team
Why did you enter the Max Perutz Science Writing Award?
A fellow PhD student at the university sent me the link and suggested I should apply. It made sense to write an article explaining the project in non-scientific terms as I was always being asked by friends and family what it was that I was doing. This was the perfect opportunity to distill my thoughts into a form that could be understood by everyone and that I could direct people to if they were interested. I never expected to end up winning the competition.
How did taking part in the competition and winning the award change your thoughts about science communication?
Having to sit down and write something without jargon made me look at my work in a different light. Trying to see something you are deeply involved in from a more distant and very different perspective can be quite challenging, but very refreshing. The question set to us was, “Why does your research matter?” Getting to the heart of that question meant engaging with the emotion that drives the work in the first place.
The whole process has made me appreciate good writers and their ability to present complex information in an engaging way. It has also encouraged me to write about the everyday scientific work I’m doing in Kenya in a manner that can be understood by friends and family. Read more
The University of Newcastle’s Doug Turnbull is part of a team (with Professors Mary Herbert and Alison Murdoch) that is developing a technique to prevent inherited genetic conditions called mitochondrial diseases. ‘Mitochondrial transfer’ replaces a woman’s faulty mitochondria with those of a healthy donor, and combining the technique with IVF could mean affected women no longer pass on these diseases.
As the public consultation on whether to change the law to allow mitochondrial transfer draws to a close, Katherine Nightingale talks to Doug about the technique, why it’s needed and what it’s like to be working in a potentially legislation-changing field.
Will we have heard of any of these mitochondrial diseases?
The diseases affect the mitochondria — the ‘batteries’ of the cell that produce the energy cells need to function properly. You might not have heard of them; some, such as Leigh’s syndrome, have been known for many years among doctors and researchers but the collective term of mitochondrial diseases isn’t well known among the public, even though around 1 in 6,000 children is born with some kind of mitochondrial disease. The diseases most affect the parts of the body that use the most energy: the brain and nervous system, muscles and other major organs such as the heart and liver.
The intriguing thing about mitochondria is that they have their own DNA, separate to the DNA in a cell’s nucleus. The affected genes in mitochondrial diseases are in this mitochondrial DNA, meaning they are inherited differently to other genetic diseases — only mothers pass them on to their children through their eggs. Read more