Living With and Beyond Cancer – an NCRI initiative

Why do we need this work?

Improvements in cancer diagnosis and treatment mean that people are living longer after a cancer diagnosis. Combined with an ageing population in the UK, a growing population of people are now living with the consequence of cancer and cancer treatment.

We want to increase the level of research relevant to living with and beyond cancer to generate reliable and practice-changing evidence. Ultimately we want to help improve the lives of people affected by cancer and their experiences of living with cancer.

To achieve this, we’ve developed our Living With and Beyond Cancer initiative.

The Living With and Beyond Cancer initiative

Dr Feng Li leads the NCRI’s Living With and Beyond Cancer initiative, and explains how the initiative has already made some key progress: “One of the barriers to research has been that people have different understandings of what living with and beyond cancer research includes. So we developed, through literature reviews and stakeholder consultation, a clear definition which clarifies this area of research and has now been adopted by stakeholders.”

The next stage is to run a Priority Setting Partnership with the James Lind Alliance, to understand the priorities for research into living with and beyond cancer.

A Priority Setting Partnership brings together patients, carers, health and social care professionals to work out what are the most important questions for researchers to answer.

Dr Li explains the need for the Priority Setting Partnership: “We have identified that a lack of clear research priorities has been a barrier to living with and beyond cancer research. Once we have identified the research priorities that matter most to people affected and professionals who work with them, we will work with researchers and research funders to answer these questions.”

Richard Stephens, Patient Representative for Living With and Beyond Cancer initiative, and Chair of NCRI Consumer Forum, says of the initiative: “The question we patients ask most often is simply, “How do I cope?”. The Living With and Beyond Cancer initiative aims to find more answers for more of us. I am delighted NCRI is leading it and that I am part of it.”

More people are living with and beyond cancer. Let’s help them to live as well as possible.