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Maureen Rigney
Moderator of
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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: 5
- 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
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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. 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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MS 04.02 - Lung Cancer Advocates and Measuring Value in Healthcare (ID 7654)
11:15 - 11:30 | Presenting Author(s): Carolyn Aldige
- Abstract
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Abstract:
The United States has no formal system of health technology assessment, compared to, for example, the system in the United Kingdom and many countries worldwide. In the U.S., certain federal agencies review and recommend approval of drugs and devices, while others make determinations regarding reimbursement of costs of treatment and other interventions. With the cost of health care in the U.S. skyrocketing in the absence of cost controls, many organizations, e.g., the American Society of Clinical Oncology, the National Comprehensive Cancer Network, Memorial Sloan Kettering Cancer Center and others, have developed “value frameworks”. In virtually all cases, however, the frameworks were developed without input from patients, their caregivers or patient advocates. They were developed from evidence obtained in randomized controlled trials and did not include real-world evidence, such as from observational studies or patient experience reports. Decisions about what patients value were often made by clinicians and economists and not by the patients whose lives would be impacted by the recommendations.The situation becomes even more complex when one considers that all patients do not share the same values with regard to outcomes. While a younger, otherwise healthy patient might accept significant treatment toxicity in order to extend life, an older, less healthy patient might choose treatment that is likely to be less toxic. As treatment costs escalate, financial toxicity is also a consideration and varies among individual patients. A treatment that imposes significantfinancial burden on one individual might not be perceived as overly costly by another.Family/caregiver preference also needs to be taken into consideration, as all demographic groups do not share the same preferences or values. Whereas in some groups, the patient’s preference is what counts, in others, family members are much more involved in decision making.In May 2015, researchers from the American Institutes for Research and the Mayo Clinic published a study based on extensive interviews with 721 patients.
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MS 04.03 - Accessing New Lung Cancer Therapies - Challenges & Experience in Latin America (ID 7655)
11:30 - 11:45 | Presenting Author(s): Mirna Patricia Mondragon
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Regarding the main disadvantages to access: 1. Where there are structural factors that grant the right and Promote coverage, bureaucratic issues arise that Complicate access. 2. There is in general an underutilization of the available public resource, for lack of information. 3. Many patients who depend on public coverage lack of an education from which they can empower themselves situation. Many times they lack the knowledge and Tools to expand their options. 4. The delay or inefficient response by the public coverage remains, even increases, or extent a claim made by patients and their relatives. 5. Delays both in the delivery of medicines and in obtaining shifts, in order to conduct a study. Problems of transfers, Great distances to treatment centers. Mexico, Brazil, Peru, Argentina and Chile to mention some examples in Latin America we have very fragmented health systems, little or no budget for avant-garde treatments like Immunotherapy or targeted therapies. Lung Cancer patients often do not know their rights, they do not empower themselves and require the inclusion of these therapies. While efforts have been made to tighten anti-smoking laws, there is a long way to go and educate to create awareness.
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MS 04.04 - Patient Advocacy - Making a Difference for Lung Cancer Patients in Japan (ID 7656)
11:45 - 12:00 | Presenting Author(s): Toshiyuki Sawa
- Abstract
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Background of Japanese lung cancer advocacy In Asian countries, the concept of cancer advocacy has not been sufficiently recognized. In Japan, there had been few groups of lung cancer patients for a long time, and West Japan Oncology Group (WJOG) has practiced cancer advocacy learned from the USA and Europe as a citizen lecture and a guidebook for patients. We noticed that interactive efforts involving patient groups, companies, academia and governments are necessary rather than providing one way information. In recent years, Lung Cancer Society (JLCS) has led the lung cancer advocacy, and adopted the 2014 Kyoto Declaration, which Representatives of the society, lung cancer patients, citizens, medical personnel, government, companies and research institutes, declared the will to the improvement of lung cancer medical care in cooperation. First, the medical improvement committee against lung cancer was organized to to realize the goal of the Kyoto Declaration, and The committee has carried out the following activities. Initially, the ambassador was commissioned to a lung cancer survivor, a futsal professional athlete and one medical school student of a leader of the idol singer group. In line, we currently commission six medical school students, students of pharmacy, and nursing students. One of our main activities is to provide information on lung cancer medical care using websites and events. In addition to the public lecture, medical workers seminar, the event by the patient association had been supported. These activities are open to the public so that citizens and medical staff can recognize widely in cooperation with medical media. Also, in collaboration with the Lung Cancer Society, we are also requesting early approval of new therapeutic agents. Evaluation of Japan's advocacy To evaluate the awareness and attitude of lung cancer advocacy activity among patients, medical workers, and the general population in Japan, web survey was planned for the perceptions of Kyoto declaration and JLCA (Japanese alliance for lung cancer advocacy) events which were carried out by JLCS in these 2 years. Furthermore, we tried to reflect the questionnaire result in the subsequent activity plan. An internet survey was conducted which contained 6 closed-ended (selection one or free answers) and open-ended questions, depending on the JLCA network population in June 2016. Results By October 2016, 109 people of responded involving 36% of patients and their family, 25% of MD and medical worker, 19% of pharmaceutical company officials and 16% of news media. Perception of Kyoto declaration was 21% of attendee, 27% of well-known, 13% of partial known and 39% of non-awareness. Also the number of participants to the events of JLCA is, 49% of 0 times, 17% 0f 1-2 times, 24% of 3-4 times and 11% of more than 5 times. The most sympathy events ware voted to 1) lecture by a physician 57%, 2) lecture by survivor and the participants WCLC of cancer patients 46%, 3) information in the facebook and the web site 46% 4) citizen open lecture of lung cancer 39%, 5) Performance by society ambassador 38%, 6) advocacy program in annual meetings 26% and 7) Medical seminars around the country 26%. The proportion of respondents who have a certain reputation in the activities of JLCA was 76%.The requests to JLCA is, 1) is the most participation opportunities for information of new treatment and participation opportunities to clinical trial, followed by 2) wish to participate to all the programs in the Society. Looking for the next difference 1. Activities in the next fiscal year, reflecting the results of the questionnaire, citizen public lectures consisted mainly of lectures by prominent oncologist, announcements of representative survivors, moderators and lectures by public ambassadors. Events were held in major cities and various places across Japan. Also The lung cancer society organizes the patient advocacy program throughout the annual meeting every year. We provide travel grants from 2016 to facilitate patient and family attendance. 2.The committee holds medical seminars in Tokyo four times a year. The theme was the latest current information surrounding lung cancer from time to time, introduction of new treatment and activity of patients group. In addition, journalists, television reporters and medical writers were invited to provide information to the public widely by articles posting. 3. Through the website, we provide topics on diagnosis and treatment for lung cancer using video, activity policy and advocacy activities of the lung cancer society, documentary on participation of the international conference of the patient association. In conclusion, participants from different professions gathered for the purpose of improving lung cancer medical care, shared recognition was born among the participants, and empathy was also obtained with the public relations ambassador. Meanwhile, because of different professions and position, the hope of the content of activities was diverse, and it seems necessary to enhance the priority business that can be shared.
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MS 04.05 - Lung Cancer Patients and Stopping Smoking - What Advocates Need to Know (ID 7657)
12:00 - 12:15 | Presenting Author(s): Aoife McNamara
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Abstract:
Smoking and lung cancer Since the 1950’s, smoking has been associated with lung cancer (US National Llibrary of Medicine, 2017). Lung cancer is the most common cancer worldwide and the biggest cancer killer (World Health Organisation, 2017). The majority of lung cancer diagnoses are due to smoking (US National Llibrary of Medicine, 2017), yet these frightening statistics have not deterred people around the globe from smoking. The World Health Organisation estimated that, in 2015, 1.1 billion people smoked tobacco. Within this cohort are lung cancer patients and their families, unable or unaware of why they should quit. This presents a great challenge to patient advocates worldwide. Awareness Awareness of the significant health risks associated with smoking vary around the world, so the role of the patient advocate also varies from country to country. In 2013 the Global Lung Cancer Coalition launched a survey, carried out by Ipsos MORI, investigating awareness of the symptoms of lung cancer and smoking prevalence in 21 countries. Researchers found that across all the countries, 22% of people surveyed admitted they could not name any symptoms of the disease. Over 17,000 people were surveyed, among them former smokers were slightly more likely to be aware of symptoms than current smokers or people who have never smoked. Multiple studies have replicated similar differences in awareness of the link between smoking and lung cancer across countries. Research performed by the Irish Cancer Society in 2015 found that; 92 out of 100 smokers know that smoking causes lung cancer. In contrast, the Global Adult Tobacco Survey (2010) found that in China; 23% of adults believe smoking causes stroke, heart attack, and lung cancer. While every country requires a message specific to their population, the common theme is stopping smoking is the most important thing the public can do to reduce their risk of lung cancer and it is never too late to benefit from stopping, even after a diagnosis of a smoking-related disease. Benefits of quitting Smoking not only increases your risk of lung cancer, but of multiple cancers, heart disease, stroke, lung disease, and fertility and pregnancy problems (US National Library of Medicine, 2017). Tobacco smoke contains around 7,000 chemicals. Many of these are poisonous and over 60 are known to be cancer causing. For people already diagnosed with lung cancer, smoking cessation can seem pointless but there are clear benefits to stopping smoking including better treatment efficacy, fewer side-effects, less risk of recurrence and less risk of developing other smoking-related health problems (American Society of Clinical Oncology, 2016). There are immediate and long-term health benefits of quitting for all smokers, including those already diagnosed with lung cancer, including (World Health Organisation, 2017): Within 20 minutes, your heart rate and blood pressure drop After 12 hours, the carbon monoxide level in your blood drops to normal Within 2-12 weeks, your circulation improves and your lung function increases At 1-9 months, coughing and shortness of breath decrease By 1 year, your risk of coronary heart disease is about half that of a smoker's Within 5-15years, your stroke risk is reduced to that of a non-smoker By 10 years, your risk of lung cancer falls to about half that of a smoker and your risk of cancer of the mouth, throat, oesophagus, bladder, cervix, and pancreas decreases Within 15 years, the risk of coronary heart disease is that of a non-smoker’s. Role of advocates Advocates have an opportunity to promote smoking cessation on a National scale as well as at an individual level. This can seem like an overwhelming task in light of the significant health burden smoking presents, however international support is available. In 2005 The World Health Organisation Framework Convention on Tobacco Control (WHO FCTC) was created. This evidence-based treaty reaffirms the right of people to the highest standard of health, provides legal dimensions for international health cooperation and sets high standards for compliance. Each MPOWER measure corresponds to at least 1 provision of the WHO Framework Convention on Tobacco Control. The 6 MPOWER measures are: Monitor tobacco use and prevention policies Protect people from tobacco use Offer help to quit tobacco use Warn about the dangers of tobacco Enforce bans on tobacco advertising, promotion and sponsorship Raise taxes on tobacco. At an individual level, advocates can play a vital role in encouraging lung cancer patients and their families to avail of behavioural support and medication to assist their smoking cessation efforts. Lung cancer patients are burdened with elevated levels of distress in comparison to other cancers (Zabora et al., 2001) and research suggests that stigma and the association with tobacco is a very real issue for lung cancer patients (Chapple et al., 2004). This is in addition to being diagnosed with the biggest cancer killer worldwide, a probable late stage diagnosis, poor prognosis and debilitating symptoms. For the lung cancer patient, advocate guidance and support is vital to successfully quit smoking. People diagnosed with cancer often keep quiet about their smoking because (American Society of Clinical Oncology, 2016): they fear judgement or blame from their family or doctor they think they might get less support for their cancer treatment the think it is pointless to stop as they already have cancer they believe smoking helps them cope with stress they have tried to stop before unsuccessfully. The challenge for patient advocates is balancing this support at an individual level with the need to evoke change at a National and International level.
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Author of
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MA 04 - Advocacy: Listen to the Patients (ID 655)
- Event: WCLC 2017
- Type: Mini Oral
- Track: Patient Advocacy
- Presentations: 1
- Moderators:Rudolf M Huber, C.L. Dégi
- Coordinates: 10/16/2017, 11:00 - 12:30, Room 313 + 314
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MA 04.11 - A Comprehensive Vision to Reduce Lung Cancer Stigma: Changing Cultural Perspectives on Lung Cancer (ID 9507)
12:05 - 12:10 | Author(s): Maureen Rigney
- Abstract
- Presentation
Background:
Lung cancer stigma has wide-reaching effects and impacts treatment, quality of life, survival, societal attitudes, research funding, and advocacy efforts. Those affected by lung cancer commonly feel hopeless, isolated, reluctant to share their diagnosis in addition to feelings of guilt, shame, anxiety and depression. Stigma responses can hinder information seeking information related to treatment options and psychosocial support and, tragically, can cause delays in diagnosis and even refusal of treatment. Major pan-cancer organizations, those dedicated to all lung diseases as well as lung cancer-specific organizations conduct awareness raising campaigns designed to confront lung cancer stigma, all working in some measure to create a more compassionate and empathic environment for those at-risk and diagnosed. These efforts have not been coordinated and to date, no known comprehensive vision to address lung cancer stigma in its entirety has been developed.
Method:
HIV/AIDS and mental health advocates have devoted extensive efforts to developing coordinated stigma reduction plans. While not always applicable, their approaches can inform our efforts in lung cancer. To develop a comprehensive framework to address lung cancer stigma, a synthesis of relevant strategies used in other disease-states, a review of lung cancer stigma literature and exploration of the efforts of organizations and individuals from around the world was conducted.
Result:
Awareness-raising, myth-busting and public health advocacy are featured prominently in other stigma-reduction plans. Lung cancer, like HIV/AIDS and other smoking-related cancers, must also address nihilism from medical professionals and work to ensure non-judgmental discussions and compassionate treatment environments that explore appropriate treatment options become the norm. Founded on seven key areas of opportunity, the plan includes multiple areas of impact that need to be addressed. Included are suggested remediation methods and real-world examples from all over the globe to illustrate creative ways lung cancer stigma reduction can be approached. This comprehensive, multi-level, multi-pronged vision allows individuals, systems and organizations to find points of convergence and work collaboratively on addressing the stigma so closely associated with lung cancer.
Conclusion:
Through a comprehensive approach, lung cancer stigma can be reduced and ultimately eliminated. To initiate a global conversation and better unite the lung cancer community, we offer this unifying strategy to address lung cancer stigma. Through the menu of stigma-reduction strategies, we hope to spark conversation, collaboration, and convergence. Dedicated medical professionals, survivors, loved ones, advocacy organizations and others can use the vision to apply appropriate strategies in their regions/countries and work collaboratively toward this all-important goal.
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MA 08 - Supportive Care and Communication (ID 669)
- Event: WCLC 2017
- Type: Mini Oral
- Track: Nursing/Palliative Care/Ethics
- Presentations: 1
- Moderators:E. Esposito-Nguyen, John McPhelim
- Coordinates: 10/17/2017, 11:00 - 12:30, Room 511 + 512
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MA 08.06 - Assessment to Programming: Responding to the Needs of the US Lung Cancer Community (ID 9394)
11:35 - 11:40 | Presenting Author(s): Maureen Rigney
- Abstract
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Background:
Research shows people diagnosed with lung cancer have greater unmet supportive care, physical and emotional needs compared to those diagnosed with other cancers. Much of this research is older and primarily focused on small numbers of newly diagnosed patients. Other research has focused on the relative lack of treatment options and does not address practical and psychosocial needs.
Method:
To more fully understand the current unmet needs of lung cancer survivors, an online survey was distributed between 11/9/2015 and 2/8/2016. Of 820 respondents, 471 were lung cancer patients/survivors with 349 loved ones. Queried on treatment histories, respondents were asked to identify the most prevalent and problematic symptoms and side effects experienced during treatment, shortly after treatment ended and at 5+ years post-diagnosis. They were also asked which were most problematic during each time period.
Result:
The survey had an overall 72% completion rate with 21% of survivor-respondents indicating a diagnosis 5+ years prior. Patients/survivors rated anxiety, fatigue and shortness of breath as most challenging in the immediate, post-treatment, and long-term. During treatment, gastrointestinal issues including constipation, diarrhea and nausea were also highly problematic. All groups reported physical effects were significantly more problematic during treatment but deemed emotional effects more difficult to manage post-treatment and in the long-term. In open-ended questions, nearly 25% of respondents indicated they received inadequate information/assistance to manage physical and emotional reactions, both during and after treatment. Only 27% of respondents had a discussion about palliative care with just over 20% having received it. The survey affirmed that assistance to manage lung cancer’s symptoms and treatment side effects is an unmet need in the lung cancer community. In response, a four-part educational series, including webinars and accompanying print materials, was developed. The series is the only to focus specifically on lung cancer and helps participants understand the causes of the top four reported symptoms and side effects, including potential medical interventions and holistic, practical tips that can used immediately.
Conclusion:
Those diagnosed with lung cancer are the experts and we can only understand their unmet needs by asking them. This large, extensive survey provided insight into their needs during, immediately after and long after treatment. Our initial four-part webinar series is only the beginning--through our results and querying webinar participants, we are developing additional educational programming to help those diagnosed with lung cancer and their loved ones understand and manage their specific disease and treatment-related challenges.
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P3.11 - Patient Advocacy (ID 727)
- Event: WCLC 2017
- Type: Poster Session with Presenters Present
- Track: Patient Advocacy
- Presentations: 1
- Moderators:
- Coordinates: 10/18/2017, 09:30 - 16:00, Exhibit Hall (Hall B + C)
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P3.11-002 - Immunotherapies and Lung Cancer: Educating the Global Lung Cancer Community (ID 10178)
09:30 - 09:30 | Presenting Author(s): Maureen Rigney
- Abstract
Background:
Established in 2001, the Global Lung Cancer Coalition (GLCC) is the international 'voice' of lung cancer patients. Comprised of 35 non-government patient organizations in 24 countries and the UK, nearly half of member organizations are run by fewer than five staff or are completely volunteer-run. Several meet the criteria of developing countries under the United Nations definition. The option of immunotherapy treatment is still relatively new in lung cancer and smaller, under-resourced member organizations have neither the expertise nor capacity to create credible educational materials on such a complex subject. The goal of this project was to offer information on immunotherapies to educate the global lung cancer community.
Method:
Created by coalition member representatives and reviewed by medical experts, the Immunotherapy and Lung Cancer factsheet provides an overview of immunotherapies and how they work. It has been professionally translated into the 17 primary languages of GLCC organizations and is available on the GLCC website. Member and non-member organizations and individuals can download the factsheet to help patients all over the world understand this new treatment option for lung cancer.
Result:
In the first six months after the October 2016 re-launch of the GLCC website, the factsheet was downloaded 276 times. At the December 2016 annual in-person meeting of GLCC, the coalition voted to prioritize and expand the effort to produce and translate additional educational materials. GLCC members are currently working on lung cancer screening and smoking cessation materials that will also be translated.
Conclusion:
An international coalition can take the lead in providing not just members but the broader global lung cancer community access to resources otherwise unavailable to them. Available in Chinese, Japanese, Danish, Slovenian, Dutch, Bulgarian, Swedish, German, Spanish, Italian, French, Norwegian, Turkish, Hebrew and English, the Immunotherapy and Lung Cancer factsheet, as well as future materials, are available to individuals, cancer providers and organizations from anywhere in the world to download, print and distribute.
