About living with and beyond cancer research

The UK has a growing population of people affected by cancer, yet the level of research relevant to people living with and beyond cancer is low in the UK. It is therefore important to carry out research to improve the quality of life of those affected by cancer. Towards the end of 2016 we have set up an initiative help increase the level of research in this area.

One of the key issues which emerged from past National Cancer Research Institute (NCRI) work as to why this area is under-researched is the ambiguity in the definition of survivorship, which has traditionally been used to describe this area. Survivorship means different things to different people. Some consider it as being the whole journey from diagnosis to end of life. Others consider it as being the period from the end of treatment to, in some cases, the ultimate requirement for end of life care. Going forward NCRI intends to use ‘research relevant to people living with and beyond cancer’ to describe this area instead of ‘survivorship’, as it is a more useful and tangible term for funders, researchers and people affected by cancer.

NCRI has considered academic sources and consulted relevant stakeholders and defined what is living with and beyond cancer research. The subtopics that constitute the living with and beyond cancer scope align with the various stages of the patient journey as shown below.