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Jesme Fox
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MS 04 - Joint IASLC/GLCC Session Current Issues in Lung Cancer Advocacy (ID 526)
- Event: WCLC 2017
- Type: Mini Symposium
- Track: Patient Advocacy
- Presentations: 1
- Moderators:Natasha B Leighl, Maureen Rigney
- Coordinates: 10/16/2017, 11:00 - 12:30, Room 316
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MS 04.01 - Lung Cancer Advocacy Tools for Everyone - The Use of GLCC Data (ID 7653)
11:00 - 11:15 | Presenting Author(s): Jesme Fox
- Abstract
- Presentation
Abstract:
Background: Despite recent advances, lung cancer remains a disease characterised by negativity, late diagnosis and poor outcomes. The need for advocacy in lung cancer is obvious. Recent years have seen an increase in the number of organisations and individuals advocating for improvements in this disease. With limited resources across all advocacy organisations, using external data and tools from other sources is welcome. Such a source is work undertaken by the Global Lung Cancer Coalition. The Global Lung Cancer Coalition: In 2001, a global search revealed the existence of only nine not-for-profit organisations with an interest in lung cancer advocacy. Of these, only two were lung cancer–specific, the others representing generic cancer or respiratory diseases. In coming together, these organizations established the Global Lung Cancer Coalition (GLCC), an allied group of registered not-for-profit, non-government organizations, dedicated to improving lung cancer outcomes. By 2017, the GLCC has grown to 36 member organisations, from 26 countries and provides a centralised communication and referral network. In recent years, the GLCC has undertaken a number of projects, creating data and tools, for all advocates to use, in their efforts to improve lung cancer outcomes. More information on all of these are available on the GLCC website – www.lungcancercoalition.org. Key Global Lung Cancer Coalition Projects - The Global Lung Cancer e-Atlas The e-Atlas is available on the GLCC website. It is an easily accessible source of international lung cancer data, including all WHO countries. The purpose was to collate lung cancer data from across the globe and uncover international variations. This includes incidence, mortality and survival data. Also, an indication of whether the country has Cancer Registry, has signed up to the WHO Framework on Tobacco and/or has a National Cancer Plan. The e-atlas brings all of this information together in an easily accessible place. This is a data resource for lung cancer professionals and campaigners. It is easy to compare data across countries and easy to create graphs, for download into powerpoint presentations and reports. This resource has already been used by many advocates, in discussions with politicians and health policy makers, to highlight differences in inter-country survival. The e-atlas will be updated, as international data sets are updated. Where possible, we will also add links to national lung cancer data sources. International Consumer Polls GLCC commissioned IPSOS/MORI to undertake two consumer polls in GLCC member countries in 2011 and 2013. These examined issues of stigma and also of general public awareness of lung cancer symptoms. In 2017, these two polls are being repeated by Populus and will be undertaken in 25 countries. This will provide update information in GLCC countries covered by the original polls and new information for newer GLCC member countries. Smoking stigma associated with lung cancer and poor public awareness of signs and symptoms of the disease are of obvious importance. Such polls provide valuable information for advocating and campaigning for improvement and change. Global Lung Cancer Research data The GLCC commissioned researchers at King’s College in London, to undertake some bibliometric research, to map published lung cancer research, across the globe. This type of research involves the quantitative analysis of publications and research activity, using complex bespoke algorithms This work was published, as an open access article, in June 2016 in the Journal of Thoracic Oncology. (Agarwal A, et al, ‘The State of Lung Cancer Research – A Global Analysis)’. Results of this work show the relative lack of lung cancer research globally. Individual Country Toolkits have been created to raise awareness of lung cancer research nationally and advocate for more. GLCC has commissioned further research in this area, investigating how published research is used – for example, does it change practice, how is the research implemented and what research is media reported. Information on Lung Cancer – Topical Factsheets GLCC has created factsheets in topical area, available for download from the GLCC website. These include Information on Clinical Trials and the relatively new therapy field of Immunotherapy. The Immunotherapy Factsheet is available in 16 languages. Factsheets are now also available on Lung Cancer Screening and Lung Cancer and Stopping Smoking. These are available for everyone to download and distribute. Lung Cancer Awareness Information Sheets The GLCC has created Awareness leaflets. These are designed for the general public, to inform on lung cancer – What to look out for? What to do? Where to go for help and support? The leaflets have been translated into 13 languages and are available for download on the Resource section of the website. In this presentation, all of the above will be expanded on. We invite all who advocate for improvements in lung cancer to use these resources.
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