Resources

LWBC research priorities launch

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.

LWBC Priority Setting Partnership documents

Living With and Beyond Cancer Research Priorities

Living With and Beyond Cancer PSP protocol

Living With and Beyond Cancer PSP survey (all questions)

Living With and Beyond Cancer PSP top 26 questions evidence check

Living With and Beyond Cancer PSP engagement summary

Other James Lind Alliance PSPs (updated to November 2018)

See also the James Lind Alliance website for more about this and other Priority Setting Partnerships

Patient Reported Outcome (PRO) tools

Trial Design – SPIRIT-PRO Extension

Collecting PROs

Reporting PROs – CONSORT PRO Extension

Guidelines in development – Setting International Standards in Analyzing Patient-Reported Outcomes and Quality of Life Endpoints Data (SISAQOL)

Promoting and disseminating the LWBC research priorities

Now we are calling on the research community and funders to address the most impactful research questions that will help people live better with and beyond cancer. Please help us spread the word! 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.
  • NCRI launches 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
  • Future LWBC publications and promotional materials will be made available here. You can also email lwbc@ncri.org.uk to inquire about new materials.