Data and diabetes: your information can help save lives – by Emily Burns
With the General Data Protection Regulation (GDPR) now in force and strict regulations in place around how your data is stored and shared, Emily Burns explains how important data really is – and how it can save lives.
There’s been a lot of talk about data recently. Last month, strict rules (called the General Data Protection Regulations) came into place around how your data can and can’t be used. Alongside this, NHS England just announced that patients would need to opt-out of their health information being used to improve care across the UK.
So what kind of data are we talking about, and why is it important anyway?
Recently I went to see a doctor. They asked me about my height, weight, if I smoked, and if I was allergic to anything. They booked some blood tests. They asked me for my date of birth. All of that information is data. And data can save lives.
How? Well, the NHS uses the data we provide when we go to the doctor or dentist or physio (the list goes on) to learn about patients across the UK and improve the care we receive, based on what they find.
But that’s not all. Scientists can look for patterns in data, to see if new treatments for diabetes are safe or effective. Maybe a way to put Type 2 diabetes into remission, or a drug to stop the immune attack in Type 1 diabetes.
They can look for patterns in our lives, what we eat or how often we exercise, to understand why some people have a higher risk of Type 2 diabetes or diabetes complications.
They can spot important side effects of treatments being used today, to make sure long-term medications continue to be the right, safe option. And they can match the right people to the right studies and clinical trials, to help get more effective treatments out as soon as possible.
Patient data has already made a huge difference to what we know about diabetes. It has already saved lives. Here’s a few examples…
The UK Biobank
The UK Biobank holds information about half a million people across the UK. Those people have provided information about themselves (like their height, weight and age), alongside blood, saliva and urine samples. They’ve allowed that information to be shared with scientists and have agreed that scientists can follow their health over time.
This incredible resource that we support have already helped scientists learn more about the body and our risk of a whole host of conditions. It’s linked specific parts of our genetic code to a higher risk of blood pressure, and uncovered that Type 1 diabetes is far more common in adulthood than previously thought.
And right now, our scientists are using this resource to find genes that might protect against Type 2 diabetes and develop a ‘calculator’ to find people at high risk of Type 1 diabetes.
Linking blood glucose levels to complications
Around 20 years ago, we supported a study involving more than 5,000 people with Type 2 diabetes. By following their diabetes management and overall health for over 20 years, the study found that controlling blood glucose and blood pressure levels could reduce the risk of complications.
This changed the rule book on how to treat Type 2 diabetes, and went on to teach us much more.
(You can read more about this study in our research impact report).
Following four generations of Type 1 families
Our funded Bart’s Oxford (BOX) study is the longest running family study of Type 1 diabetes in the world. It began back in 1985 and is tracking the health of over 3,900 families with Type 1 diabetes using their data.
The study has helped us follow Type 1 diabetes through four generations, uncovering information about potential causes and helping us learn more about the immune system. It’s helping scientists to develop tools to predict who might get Type 1 diabetes in the future, as well as treatments we could use to prevent it.
The study uses information about family members, including their genes, blood and gut bacteria. All of this invaluable data is improving our knowledge of Type 1 diabetes.
Find out more
Sharing personal information about yourself can be scary, but there are strict regulations around how your data is stored and shared. If you’d like to find out more, Understanding Patient Data and NHS England have some great resources.