Living with and beyond cancer top research priorities in the UK – priority setting partnership


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Feng Li1,Ian Lewis1,Adrienne Morgan2,Angela McCullagh1,Anne Johnson3,Ceinwen Giles4,Diana Greenfield5,Graeme Crawford6,Jacqui Gath2,Jane Lyons7,Jervoise Andreyev8,Jonathan Tobutt9,Julia Tugwell1,Karen Robb10,Laura Cove-Smith11,Lindsey Bennister12,Natalie Doyle13,Nicolas Lee14,Rebecca Nash14,Richard Simcock15,Richard Stephens1,Sabine Best16,Stuart Griffiths1,Susan Moug17,Sandra Regan18,Patricia Ellis18

1National Cancer Research Institute,2Independent Cancer Patients’ Voice,3Velindre NHS Trust,4Shine Cancer Support,5Sheffield Teaching Hospitals NHS Foundation Trust,6Bangor Health Centre,7Cancer 52,8United Lincolnshire Hospitals NHS Trust,9Kirkwood Hospice, Huddersfield,10Transforming Cancer Services Team in London,11The Christie NHS Foundation Trust,12Sarcoma UK,13The Royal Marsden NHS Foundation Trust,14Macmillan Cancer Support,15Brighton and Sussex University Hospital Trust,16Marie Curie,17Royal Alexandra Hospital Paisley, NHS Greater Glasgow and Clyde,18The James Lind Alliance

Abstract

Background

More and more people are living with the consequences of cancer and its treatment (living with and beyond cancer), yet the level of relevant research is low compared to other types of cancer research in the UK. NCRI aims to increase the level of research in this area and to ultimately improve the lives of those affected by cancer. Undefined research priorities in this broad area has been a barrier to research. The 2015 NHS Independent Cancer Taskforce report also recommends defining research priorities and to enable this research to happen. To address this barrier the NCRI has undertaken a James Lind Alliance Priority Setting Partnership (PSP) to identify priorities that matter most to people affected by cancer and the health and social care professionals.

Method

A PSP consists of patients and carers, health and social care professionals. PSPs have several stages and begin with a UK-wide survey to gather questions about uncertainties in living with and beyond cancer. Once the results were analysed, an interim exercise takes place to further prioritise the uncertainties. The last stage is a final workshop where partners debate and finally arrive at a top 10 list of shared uncertainties.

Results

The living with and beyond cancer PSP received 3500 questions submitted by people affected by cancer and healthcare professionals. Through a 18-month rigorous process, the questions are prioritised down to the Top 10 living with and beyond cancer priorities for research in June 2018. The Top 10 will be unveiled at the NCRI conference.

Conclusion

The Top 10 uncertainties will be publicised widely to ensure that researchers and those who fund research really understand what matters to people affected by cancer. The top uncertainties will be promoted to many research organizations and relevant funders in the UK. We anticipate they will directly influence future research.