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M. Rigney
Moderator of
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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: 4
- Moderators:M. Rigney, J. Schiller
- Coordinates: 9/07/2015, 14:15 - 15:45, 703
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ED03.01 - Global Lung Cancer E-Atlas - How Can This Be Used as a Tool to Advocate for Change? (ID 1778)
14:20 - 14:40 | Author(s): S. Winstone
- Abstract
- Presentation
Abstract:
Background: The Global Lung Cancer Coalition (GLCC) is a unique partnership dedicated to improving disease outcomes for all lung cancer patients worldwide. The GLCC has a clear objective to place lung cancer on the global agenda. There are known to be significant variations both between and within countries in terms of: lung cancer incidence, mortality and survival; access to the latest treatments and to high quality specialist healthcare professionals; and investment in research and clinical trials. Evidence of variations can be a powerful tool for advocates – both clinicians and patient advocacy groups – to use to engage with policymakers about the ways in which legislative or regulatory policies can be shaped to optimise treatment and care for people living with lung cancer. However, there was no single statistical resource for the global lung cancer community to use in comparing countries, benchmarking progress, and campaigning. In 2014, therefore, the GLCC created the Global Lung Cancer E-Atlas, making accessible in one place the latest published information about lung cancer's global impact and outcomes, in an interactive format. Creating the E-Atlas: Potential data sources were mapped to identify the most current and comparable available. Incidence and mortality data were drawn from GLOBOCAN 2012[i], which provides contemporary estimates of the incidence, mortality and prevalence from major types of cancer, at national level, for 184 countries. The estimates are based on the most recent data available at the International Agency for Research on Cancer (IARC) though more recent figures may be available directly from local sources. Survival data were drawn from a variety of sources, where available. These included: CONCORD-2[ii], which includes data provided by 279 cancer registries in 67 countries; the EUROCARE-5 study[iii], which provides the most up-to-date survival analysis for patients diagnosed with cancer across 29 European countries; and the International Cancer Benchmarking Partnership (ICBP)[iv], which includes data from population-based cancer registries in 6 countries – Australia, Canada, Denmark, Norway, Sweden and the United Kingdom. The E-Atlas also details whether each country operates a cancer plan or has implemented the World Health Organization Framework Convention on Tobacco Control with data drawn from responses to the World Health Organization Noncommunicable Diseases Country profiles[v], covering 184 countries. GLCC members were invited to validate data for their country and identify any more recent national data. If more recent data were found then these were added. Using the E-Atlas: The E-Atlas allows anyone to compare statistics for lung cancer across the world. It is publically accessible on the GLCC’s website: http://www.lungcancercoalition.org/atlas/ (Figure 1): Figure 1 Figure 1: GLCC Global Lung Cancer E-Atlas home page By clicking on individual countries, or using the search function, users can 'zoom in' on different areas to see the figures for that nation. The E-Atlas also has a comparison tool, enabling the user to select up to four countries and directly compare the figures for them (Figure 2). Figure 2 Figure 2: the comparator tool GLCC campaigners have been using the E-Atlas to support engagement with national policy-makers and influencers. To support this, the project team produced a campaigning toolkit, giving headline figures, tips for engagement and template materials (press releases, briefing documents and a presentation for adaptation). Conclusions: Feedback from GLCC members confirms that the E-Atlas is a helpful resource in their campaigning and advocacy. The GLCC is continuing to develop the E-Atlas, and it will be updated with breakdowns by age and gender. The GLCC is also keen for the E-Atlas to be shared and to receive feedback (via http://www.lungcancercoalition.org/atlas/contact.php) on additional national data for inclusion or suggestions for further development. References: [i] GLOBOCAN 2012 v1.0, Cancer Incidence and Mortality Worldwide: IARC Cancer Base No. 11, Ferlay J, Soerjomataram I, Ervik M, Dikshit R, Eser S, Mathers C, Rebelo M, Parkin DM, Forman D, Bray, F. Lyon, 2013, France: International Agency for Research on Cancer. Available at: http://globocan.iarc.fr/Default.aspx [ii] 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), C Allemani, H Weir, H Carreira, R Harewood, D Spika, X Wang, et al. The Lancet, Volume 385, No. 9972, p977–1010, 14 March 2015. [iii] EUROCARE-5-a population-based study of cancer survival in Europe 1999-2007 by country and age. Available at: https://w3.iss.it/site/EU5Results/ [iv] 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, MP Coleman, D Forman, H Bryan, J Butler, B Rachet, C Maringe, et al. The Lancet Volume 377, No. 9760, p127–138, 8 January 2011. [v] Noncommunicable Diseases Country Profiles 2011, World Health Organization (WHO), 2011. Available at: http://whqlibdoc.who.int/publications/2011/9789241502283_eng.pdf
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ED03.02 - Bibliometric Research on Published Lung Cancer Research - What Are the Implications for Policy Work? (ID 1779)
14:40 - 15:00 | Author(s): R. Sullivan
- Abstract
Abstract not provided
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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
- 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. 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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ED03.04 - Advocating for Tobacco Control - the Australia Experience (ID 1781)
15:20 - 15:40 | Author(s): M. Peters
- Abstract
- Presentation
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Lung cancer was a rarity a century ago. A dramatic increase in the use of tobacco, in the form of cigarettes, and the science-based reformulation of tobacco that renders the modern cigarette so addictive, the world would not be in the grip of the current lung cancer epidemic. Several other critical factors contributed. These include ready access for sale and purchase, few limitations on time and place of tobacco use and highly skilled promotion and marketing. This combination of corporate success and health tragedy was supported by carefully orchestrated public disinformation and the achievement and maintenance of political influence. It follows from these observations that reversing the course of this epidemic requires that each of these be addressed. Now that legislation for the introduction of mandatory plain packaging of tobacco products has been passed in Ireland and the United Kingdom, Australia is not unique in any single tobacco control action. However, it has been innovative and the extent and breadth of activity is world-leading. A non-exhautive list of innovations includes Pack warnings and regulation Simple text messages(1972) Rotating text messages Graphic health warnings(2004) Mandatory plain packaging(2012) Product and sale restrictions Public information on tar content Restrictions on sales to minors Prohibition of "kiddy-packs" with <20 cigarettes Smoke-free indoors policy - non smoking in Workplaces (Federal Government initially in 1985) Domestic aircraft(1987) Public transport vehicles (bus/train/tram) Large shopping centres Motor vehicles carrying cars Indoor restaurants/bars Hospitals and health centres Smoke-free outdoors policy Al fresco dining Sports stadiums Children’s play areas Beaches and parks Railway stations and bus/tram stops Counter-advertising First TV campaign in late 1970's. Several innovative TV and radio campaigns since including "Every cigarette is doing you damage". Aims were to broaden knowledge of harms and bring risk into the present Tobacco Advertising and Promotion Restriction Voluntary banning of tobacco advertsing by the Medical Journal of Australia Banning TV and radio and later print advertising Elimination of sports and arts sponsorships Price and taxation Introduction of hypothecated tax to replace tobacco sponsorship income Removal of tobacco from consumer price (inflation) index calculation Aggressive tax increases (current Marlbro 20's > $US25) From time to time, opportunistic targetting a single state or local government entity, aimed at a specific innovation, has established a policy precedent. This has been achieved with a relatively small group of tobacco control advocates and effective health NGOs. Effective use of media has been critical in the process. The tobacco industry, in tactics used to oppose effective interventions, is quite predictable. Separate from simplistic themes of civil liberties, crystallised in the absurdist “nanny-state” concept. Common themes used to oppose evidence-based actions, include the threat of large legal penalties, spectre of illicit tobacco sales and the harm potentially caused to Australia more generally as a place to do business. Effective lobbying campaigns can be transplanted. For example, promoting the right of workers to work long hours in safe workplaces can aid arguments in favour of smoke-free dining and other public places. All of the policy victories achieved are within the scope of aims of the Framework Convention on Tobacco Control. This remains the international template and its objects are proven able to be implemented. These policy innovations have been achieved despite tobacco industry interference via the political process and well-documented donations to major political parties. Although major parties have eschewed tobacco company donations by law or choice in recent years, influence is still peddled. To counter interference, the case for tobacco control was made politically impelling. That is, the community was perceived by political decision takers to have a desire to be rid of the harms of smoking that exceeds any concerns about restrictions that need to be imposed to achieve this. A lesson from Australia is that health professionals interested in tobacco control must educate communities at the same time as they seek to alter public policy.
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