The work of the Cancer Registry falls roughly into four categories. First, information about the disease is collected – usually it’s a specialist at a hospital that provides the raw data. That is then checked and quality assured, to make sure it’s accurate and complete. It is then analysed to understand more about how many people have cancer and what happens to them. Finally, it is shared with others in ways that are appropriate and safe. That might, for example, be the Office of National Statistics so that it can publish national statistics showing cancer survival rates. It might be one of the major cancer charities which is funding a particular piece of research and wants to see how effective a treatment is. Or it might be a team of doctors specialising in cancer who want to know how well they are performing compared to other teams elsewhere.
In 2018 we launched the ‘Get Data Out’ programme. Working directly with six cancer charities, it gives patients, researchers and charities greater insight into the disease.