A great idea in theory, somewhat trickier in practice

Researchers, funders, and publishers all have work to do

In the circus of healthcare conferences how can we make patients the ringmasters and not the monkeys?Anya de Iongh member, patient panel, The BMJ, Ceinwen Giles independent consultant in field of patient experience and engagement and member, patient panel, The BMJ

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.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.The living with and beyond cancer PSP received 3500 questions submitted by people affected by cancer and healthcare professionals. Through a 18-month established rigorous process, the questions are prioritised down to the Top 10 living with and beyond cancer priorities for research in June 2018. This is the first time that clear research priorities have been identified in this area. They are the most impactful research questions that will help improve the lives of people affected by cancer. 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. Citation Format: Feng Li, Adrienne Morgan, Angela McCullagh, Anne Johnson, Ceinwen Giles, Diana Greenfield, Graeme Crawford, Jacqui Gath, Jane Lyons, Jervoise Andreyev, Jonathan Tobutt, Julia Tugwell, Karen Robb, Laura Cove-Smith, Lindsey Bennister, Natalie Doyle, Nicolas Lee, Rebecca Nash, Richard Simcock, Richard Stephens, Sabine Best, Susan Moug, Kristina Staley, Sandra Regan, Patricia Ellis, Stuart Griffiths, Ian Lewis. Top 10 living with and beyond cancer research priorities [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2019; 2019 Mar 29-Apr 3; Atlanta, GA. Philadelphia (PA): AACR; Cancer Res 2019;79(13 Suppl):Abstract nr 3348.