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.