TUF’s position on the proposed changes to Patient Data opt out and the Cancer Registry

The NHS keeps a central record of information about people with cancer, called a cancer registry. When a person is diagnosed with cancer in the UK, or is suspected of having cancer, information about them is automatically included in the national cancer registry.

It is data from cancer registries that tells us how many people are diagnosed with cancer, what treatments they have, how long they live, and whether their cancer is getting better or worse. This information can then be used to help plan cancer services and identify where further progress is needed in order to improve the lives of all people affected by cancer. It is a vital part of the work to tackle cancer.

At the moment, people can choose not to have their information used by the cancer registry, and ‘opt-out’, if they prefer by contacting the cancer registry for their country in either England, Scotland, Wales, or Northern Ireland.

However, on 25 May 2018, NHS England and NHS Digital will introduce a national consent/opt-out programme, which will allow people to opt out of their personal confidential data being used for purposes beyond their direct care. We believe that this will lead to far fewer patients with cancer registering their details on the cancer registry, resulting in less complete information for those who are researching cures and treatments for cancer.

We are joining with other charities under the banner of the Association of Medical Research Charities (AMRC) to inform the public of the importance of opting in and being able to use data for research and understanding the effectiveness of cancer treatment and care.

In our fight to tackle urology cancers, an extensive cancer registry is a vital tool. Sharing this data could save lives.

Please show your support for TUF and the AMRC campaign by using #datasaveslives


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