The UK Top 10 living with and beyond cancer research priorities were unveiled at the 2018 NCRI Cancer Conference Living With and Beyond Cancer spotlight session on 6 November 2018.
Please note that the video is approximately 85 minutes long. Click on any of the speaker links below to view their talk.
- Chair: Richard Stephens, NCRI Consumer Forum, UK
Richard, former NCRI Consumer Lead, introduces the spotlight session.
- Speaker: Ceinwen Giles, Shine Cancer Support, UK
Ceinwen unveils the top 10 LWBC research priorities. (Ceinwen’s slides)
- Speaker: Galina Velikova, University of Leeds, UK
Galina, Chair of NCRI Psychosocial Oncology & Survivorship Clinical Studies Group, on LWBC priorities. (Galina’s slides)
- Speaker: Sam Ahmedzai, University of Sheffield, UK
Sam, Chair of NCRI Supportive & Palliative Care Clinical Studies Group, on LWBC priorities. (Sam’s slides)
- Speaker: Andrew Bottomley, European Organisation for Research and Treatment of Cancer (EORTC), Belgium
Andrew on recent EORTC experience of QoL for cancer survivors. (Andrew’s slides)
- LWBC spotlight session Q&As
Our panel take questions from the audience, followed by the living with and beyond cancer video story.
See also the James Lind Alliance website for more about this and other Priority Setting Partnerships
Please help us spread the word among fellow researchers, funders and others about these research questions to help people live better with and beyond cancer. Below is a suite of materials for you to use.
- Blogs: from Ceinwen Giles, Diana Greenfield and Richard Stephens here.
- Pictures: Download LWBC top priorities photo 1, LWBC top priorities photo 2 and LWBC top priorities photo 3 for your newsletter, social media, etc.
- Flyer: Download the LWBC top priorities flyer, we are happy to provide printed copies for your organisation, event, etc, please contact us to request.
- Video: Link to the living with and beyond cancer video story: https://youtu.be/CzOyW2mw6Ko
- Slide deck: Download NCRI LWBC priorities slide deck for your talks and presentations. Also available in pdf format.
- Twitter: See shorter social media video clips and tweets at @NCRI_partners, #NCRI_LWBC
- Press release: Download the LWBC Top 10 press release.
- Protocol and research priorities: You can read more about the process in the LWBC PSP Protocol and download all 26 UK Top living with and beyond cancer research priorities.
- Newsletter copy: The UK Top 10 living with and beyond cancer research priorities
The National Cancer Research Institute (NCRI) has recently released the UK Top 10 living with and beyond cancer research priorities. NCRI partnered with the James Lind Alliance on a Priority Setting Partnership that involved two UK-wide surveys which attracted more than 3500 responses. From these, they identified 26 key questions and distilled these down to 10 top research priorities.This is the first time that clear research priorities have been identified in this area.The new priorities have been developed by cancer patients, carers,health and social care professionals. Key questions include: how can treatment side-effects, such as fatigue, be prevented or managed; what is the impact on mental health; can lifestyle changes restore patients’ health; and can we predict who will experience side effects? The NCRI is now working with funders, researchers and the UK’s NHS to translate these priorities into research and patient benefit. They will be working to stimulate funded research programmes that can make much-needed progress in improving health and quality of life for those people living with the consequences of cancer. [Option to add in information about the work your organisation is doing to support these priorities/how your organisation is involved through NCRI.» Find out more at www.ncri.org.uk/lwbc.
The NCRI Living With and Beyond Cancer Group was launched in September 2019. The group, co-chaired by Professor Sam Ahmedzai and Professor Galina Velikova, aims to develop an innovative portfolio of cross-cutting LWBC research. It will also be an important resource to NCRI’s other research groups towards developing disease-specific LWBC studies. The group is made up of the following Workstreams:
- Cancer of Unknown Primary (CUP)/Metastasis of Unknown Origin (MUO)
- Acute Care and Toxicities
- Late Consequences
- Advanced Disease and End of Life Care
Each Workstream will identify new opportunities and develop new trials within its focus area. Together, the Group’s cross-cutting remit spans across CUP/Acute Oncology, LWBC and palliative/end of life care research.
On patient led Patient Reported Outcome Measures (PROMs)
Wilson R (2018) Patient led PROMs must take centre stage in cancer research Research Involvement and Engagement 2018 4:7 https://doi.org/10.1186/s40900-018-0092-4
Selby P & Velikova G (2018) Taking patient reported outcomes centre stage in cancer research – why has it taken so long? Research Involvement and Engagement 2018 4:25 https://doi.org/10.1186/s40900-018-0109-z
On improved outcomes for patients as a consequence of the conduct of clinical research
Selby P, Liu, L, Downing, A et al (2019) How can clinical research improve European health outcomes in cancer? Journal of Cancer Policy 20 https://doi.org/10.1016/j.jcpo.2019.100182
On generating evidence to inform policy and practice
Foster C, Calman L, Richardson A, Pimperton H, Nash R. Improving the lives of people living with and beyond cancer: Generating the evidence needed to inform policy and practice. Journal of Cancer Policy. 2018;15:92-5. https://doi.org/10.1016/j.jcpo.2018.02.004
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