Every time you use the NHS, your medical records are updated, and this information is stored in a variety of places around the health service.
And every time someone’s diagnosed with cancer, information about their progress is recorded in the UK’s cancer registries.
Collectively, this information is of huge value to researchers, who can put it to a whole range of uses – from recruiting people onto clinical trials to discovering more about the causes of cancer.
But there are also big issues around confidentiality and access.
Exactly how, when and by whom health data is accessed needs to be carefully regulated. And on the flip side, over-regulation can hinder progress and slow life-saving research. It’s a tricky balancing act that needs careful thought and consideration.
Yesterday, researchers, politicians and patient representatives gathered together in Parliament to celebrate the progress being made in research using patient data and to discuss issues around access and regulation.
The reception, ‘How data saves lives – Unlocking the research potential of information’, was organised by the All Party Parliamentary Group on Medical Research and hosted by Liberal Democrat peer Lord Willis of Knaresborough, who’s also chair of the Association of Medical Research Charities (of which Cancer Research UK is a member).
Representatives of all the main political parties were present, as researchers displayed posters and talked about their work, and Professor Nic Jones, our chief scientist, was there to represent Cancer Research UK’s point of view.
Professor Jones used his speech to point out some of the problems surrounding the use of patient data in research.
Patient data should be treated sensitively because people need to be confident that their data is handled securely and confidentially at all times.
But, as he explained, the regulation and governance in this area is complex and often unclear. This can sometimes lead to valuable studies and trials being delayed, made more expensive and even abandoned altogether.
As Professor Jones pointed out, Cancer Research UK believes that the newly established Health Research Authority should take a strong leadership role in protecting these patient interests, while at the same time allowing researchers to access the data resources they need.
Celebrating our successes
Despite the need for an improved regulation system, the UK is still one of the best places in the world to do cancer research. Professor Jones highlighted some of the fantastic work our researchers have recently done using data to advance our understanding of cancer.
For example, population data formed the basis of our landmark 2011 study into the links between cancer and lifestyle and environmental factors.
And patient data was also central in helping researchers recruit participants for our study into flexi-scope bowel screening, which we co-funded with the Medical Research Council and the National Institute for Health Research. The study demonstrated that screening with flexi-scope has the potential to prevent a third of bowel cancer cases in people screened, as well as picking up the disease at an earlier stage.
The government has said it will incorporate this into the national bowel screening programme as soon as possible.
Cancer data has also been instrumental in understanding of how the NHS is working – for example showing that the current bowel screening programme is already detecting the disease earlier, but that lung cancer surgery rates need to be improved.
The reception demonstrated the exciting and valuable ways in which researchers are using data, and made it clear to everyone present just how important this issue is. It was attended by 22 MPs and Peers, who were highly engaged and really interested to see the posters displayed around the room.
They were also keen to speak to the researchers and other representatives of the medical research organisations at the event.
This is a great start, and we’ll continue to work with government and researchers to make sure that the UK’s data resources can be used to their full, lifesaving potential.
Jennifer Boon is a policy advisor at Cancer Research UK