BY CONNOR BAMFORDNHS – Ben K Adams – Flickr
Science and new discoveries rely upon access to lots of accurate data. Take for example the realisation of epidemiologist, Sir Richard Doll. He discovered that smoking tobacco leads to an increased risk in developing lung cancer and heart disease. In order to do so, his team had to personally interview patients and question their behaviour, slowly connecting the dots between smoking and cancer. Imagine if they had access to the largest medical database on the planet at the click of a finger.
In the UK, we have this very database in the form of National Health Service (NHS) medical records. But as the British Heart Foundation (BHF) outlines in their recent report (Clear and present data: how access to our medical records can help life saving science, June 2012) it is not as easy as Googling a disease.
The NHS functions by storing a detailed medical history of each patient by name, date of birth and address. This information is crucial in allowing for scientists to conduct clinical trials or to discover new links between behaviours and disease. However the very personal nature of the information inhibits its use.
Despite the majority of data used by researchers being anonymous, some, like that for clinical trials, demand the inclusion of your contact details. As if you meet their inclusion criteria, they must have some means to get in touch to include you in any potential study. Hence there exists a weave of legislation protecting our medical data. Yet, researchers feel this is an unnecessarily complex barrier to accessing the data.
This BHF battle cry comes at a time when the UK is attempting to revolutionise the way medical science is conducted across the country. By opening data up, the government hopes that a more efficient, life saving establishment will emerge. Only time will tell if this happens but until then we should begin to weigh up the risks and benefits of letting researchers peer at our medical data. Like Sir Richard Doll, who knows what they will find.