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J. Fox



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    ED 03 - Global Lung Cancer Coalition – Data-Driven Lung Cancer Advocacy (ID 3)

    • Event: WCLC 2015
    • Type: Education Session
    • Track: Advocacy
    • Presentations: 1
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      ED03.03 - The Value of National Lung Cancer Audit Data - The UK Experience (ID 1780)

      15:00 - 15:20  |  Author(s): J. Fox

      • Abstract
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      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. All organisations engaging in lung cancer advocacy are different and respond to the particular cultures and needs of their regions or countries. However, there are a number of common campaign themes: Integrated Tobacco Control programs. Increased funding for lung cancer research Increase in the number of patients enrolled in Clinical Trials Earlier diagnosis Equitable access to best practice treatment and care The Need for High Quality Data Underpinning advocacy in all of the above, is the need for advocates to access high quality, timely data on survival, quality of life and patient experience. Such data, not only provides a benchmark for the quality and outcomes of lung cancer services, but also provides advocates with a tool to campaign for improvement and showcase good practice. A good example is the work of the International Cancer Benchmarking Partnership [1], which has shown huge variation in one year and five year survival in lung cancer across the study countries, prompting health policy makers to investigate differences. The publication of the recent CONCORD- 2 data [2] has had a similar effect, with advocates highlighting 5 years survival inequalities. In November 2014, the Global Lung Cancer Coalition launched it’s online e-atlas [3 ], bringing together international lung cancer data sets and information, where available, in every WHO country. An important national initiative is the UK’s National Lung Cancer Audit [4], which is examined in further detail The UK’s National Lung Cancer Audit (NLCA) – Example of a tool for advocates The NLCA has taken around 20 years from conception to its establishment as a gold standard national clinical audit. The first discussions around the need to audit services and patient outcomes took place among a small group of UK lung cancer clinicians, in 1994. Since then, the NLCA has developed into a national audit which captures information on almost every case of lung cancer and mesothelioma that reaches hospital in the UK. It captures data on a range of demographics, clinical features and key process measures in treatment and care, spanning the patient journey. The NLCA is used by a wide variety of stakeholders within the lung cancer community to understand how care is being delivered across the country and to drive improvements to services. It includes data which are as close to real-time as possible. As contained in the Roy Castle Lung Cancer Foundation’s 2014 report on the NLCA [5], this audit has been vital to lung cancer advocates in driving improvements in lung cancer service provision. Findings of this Report highlight the NLCA’s vital contribution to: Improving clinical practice – average rates of active treatment, surgery, histological diagnosis and access to lung cancer nurse specialists have all improved during the lifetime of the audit Creating further advocacy tools - this audit data has been extensively used by UK advocacy groups, as in the web based ‘Smart Map’ [6], displaying the data in a patient friendly, easily accessible format. Supporting clinical research –The 2014 RCLCF Report [5] notes that there were at least 13 clinical research projects ongoing across the UK which were making use of NLCA data. Also, 175 key clinical journal articles published between 2006 and 2013 referenced the NLCA. Informing cancer policy and guidelines – the NLCA has been cited in much policy documentation.. The 2014 RCLCF Report [5] notes that the National Institute for Health and Care Excellence (NICE) references the NLCA at least 36 times in documents ranging from guidance, implementation guides, and audit tools to briefings. Also. the National Cancer Intelligence Network (NCIN) references the NLCA 32 times in the documents currently available on its website and uses most of the NLCA’s ‘headline indicators’ in its on-line lung cancer service profiles Raising awareness of lung cancer issues - the annual NLCA report helps to raise awareness of lung cancer issues among national and local decision-makers and the general public. It has been used almost exclusively to positively evaluate the major clinical impact of the 2011 and 2012 national public awareness campaigns (the Be Clear on Cancer campaign for lung cancer [7]), relating to persistent cough as an early warning symptom of lung cancer. Roy Castle Lung Cancer Foundation has used data from the NLCA to raise awareness of lung cancer, and variations in lung cancer care and outcomes across England and Scotland, through the publication of two reports[i] on variations in lung cancer care across the country [8,9]. Learnings for all lung cancer advocates There is a need for high quality, timely, lung cancer data on incidence, mortality, survival. Also, a need for high quality, timely data to assess health services – on diagnositics, treatment availability and support/care provision. If the above is not available – advocates need to ask why not and campaign for data collection Quality data provides lung cancer advocates with a key tool to highlight good practice, variation and inadequacies. Thus, advocating for change and improvement. References 1. Coleman MP et al, ‘Cancer survival in Australia, Canada, Denmark, Norway, Sweden, and the UK 1995-2007 (the international Cancer Benchmarking Partnership): an analysis of population-based cancer registry data’, The Lancet, Vol. 377, January 2011 2. Allemani C, Weir HK, Carreira H, et al., and the CONCORD Working Group. Global surveillance of cancer survival 1995-2009: analysis of individual data for 25,676,887 patients from 279 population-based registries in 67 countries (CONCORD-2). Lancet 2015; 385: 977–1010 3. GLCC website – Global Lung Cancer e-Atlas. http://www.lungcancercoalition.org 4. Health and Social Care Information Centre, National Lung Cancer Audit annual reports, via: http://www.hscic.gov.uk/lung 5. Roy Castle Lung Cancer Foundation, Leading the information revolution in lung cancer intelligence: why the National Lung Cancer Audit is the key to transforming lung cancer outcomes, January 2014. 6. Roy Castle Lung Cancer Foundation’s Smart Map. http://roycastle.org/news-and-campaigning/campaigns/interactive-map 7. Be Clear on Cancer – Lung Cancer campaign, via http://www.campaigns.dh.gov.uk/category/beclearoncancer/ 8. Roy Castle Lung Cancer Foundation, Explaining variations in lung cancer in England, July 2011 9.Roy Castle Lung Cancer Foundation, Explaining variations in lung cancer in Scotland, 2011

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