Our Living With and Beyond Cancer initiative

Today in the UK, around 2.5 million people have received a cancer diagnosis at some point, and this number is expected to rise to 4 million by 2030 as the population ages and treatments help more people live with and beyond cancer¹.  Many of these individuals will return to good health, but many others will have complex needs as a result of their cancer.

By analysing funding data in the NCRI Cancer Research Database, the NCRI identified that the level of research relevant to people living with and beyond cancer is and has been low in the UK compared to other areas of cancer research such as treatment research.

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 the impacts of cancer and its treatment.

The NCRI promotes partnership working and collaboration to accelerate progress in cancer-related research. To tackle this issue, we brought several Partner organisations together to work to address barriers to research in this area, and ultimately increase the level and quality of research.

This became the NCRI’s 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.”

We are currently running 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, and healthcare 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.”

In parallel, NCRI will develop a programme of work to help researchers access funding from relevant funding bodies and to integrate relevant research activity into the work of the Clinical Studies Groups. These activities will provide the infrastructure necessary to ensure the newly identified research priorities can be translated into high quality research.

Richard Stephens, Patient Representative for the 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.

 

 

¹ Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer 2012; 107: 1195-1202.