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Matthew Peters



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    ES16 - Joint Global Lung Cancer Coalition/IASLC Session: Hot Topics for Advocates (ID 240)

    • Event: WCLC 2020
    • Type: Educational Session
    • Track: Patient Advocacy
    • Presentations: 2
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      ES16.01 - Chair (ID 4085)

      14:15 - 15:15  |  Presenting Author(s): Matthew Peters

      • Abstract

      Abstract not provided

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      ES16.04 - Campaigning for Lung Cancer Screening - A Tool for Advocates (ID 4088)

      14:15 - 15:15  |  Author(s): Matthew Peters

      • Abstract
      • Presentation
      • Slides

      Abstract

      Introduction

      The Global Lung Cancer Coalition (GLCC) is a partnership of 40 patient organisations across 29 nations, dedicated to improving outcomes for lung cancer patients.

      Early detection is critical to improving lung cancer survival rates however, too many patients are diagnosed at an advanced stage of disease. This diagnosis often comes at a point when treatment options are limited and less likely to be successful. For many years, researchers have investigated different methods of testing people who may be at higher risk of lung cancer. While the US moved quickly to recommend annual CT screening for current or former smokers following the US National Lung Screening Trial in 2011[i], routine screening for lung cancer remains limited across the rest of the world. However, pressure to implement national early detection programmes and/or screening approaches has been building.

      Many GLCC members and other advocates have been campaigning for lung cancer screening to be introduced in their countries. However, evidence of what is happening on screening within different countries is not always easy to find. Therefore, the GLCC set out to compile a new online and open-access Lung Cancer Screening Resource Centre, bringing together global evidence for screening on the coalition’s website. By putting the materials in one place, the GLCC intends to make it easier for advocates to find the resources they need to make their case for a screening programme to national politicians and policy-makers.

      Methods

      Using an educational grant provided by Pfizer, the GLCC commissioned a health policy consultancy to run an extensive literature search to map out relevant publications, protocols and other useful materials. The literature search identified a long-list of evidence on the effectiveness of lung cancer screening and the practical considerations for setting up a national programme.

      These data sources were validated and prioritised by a small group of international experts in lung cancer screening, who ensured key publications were included and recommended additional material to incorporate. Additionally, four global experts who had each been involved in setting up national screening programmes were then interviewed about their experiences and how they had overcome any challenges to establish a service. From this, the team created and addressed a set of commonly asked questions about the practicalities of setting up a lung cancer screening programme.

      Results

      The Lung Cancer Screening Resource Centre was launched in March 2020 and can be found at: www.lungcancercoalition.org/screening-resource. The centre contains a wealth of information, including:

      - National policies from governments and health authorities

      - Links to studies evaluating approaches to screening including the US National Lung Cancer Screening Trial and Dutch-Belgian NELSON study

      - Clinical protocols for healthcare professionals to follow in setting up programmes

      - Guidelines for determining who should be invited for lung cancer screening and how the screening process should take place

      - Patient materials for those who may be at risk of lung cancer and might wish to be screened, to enable them to make an informed choice about being screened

      - The expert Q&A, with commonly asked questions

      Visitors can see each material’s author(s), date of publication and a short summary of content. They can then click through from the site to the original source.

      The site was promoted through the GLCC’s social media platforms, networks and partnerships. The team also contacted clinical organisations and professional societies with an interest in lung cancer, with requests for them to include it in newsletters and member outreach.

      The Lung Cancer Screening Resource Centre received more than 1,300 page views since launch, with surges in visitors around the time of launch and in November 2020’s Lung Cancer Awareness Month. The top five countries in terms of visits numbers were the United Kingdom (619 visits), the United States (282 visits), Taiwan (62 visits), Canada (45 visits) and Bulgaria (44 visits).

      Image: Lung cancer screening resource centre homepage available at: www.lungcancercoalition.org/screening-resource

      glcc lung cancer screening homepage.png

      Conclusion

      The Lung Cancer Screening Resource Centre was welcomed by the GLCC’s membership and partners and we hope it is proving useful to advocates in their campaigning efforts.

      The resource is being regularly refreshed as new publications and materials are produced. For example, many screening programmes were disrupted by COVID-19 and had to be adapted to ensure safety for both participants and healthcare professionals. Materials on how programmes were adapted for COVID-19 are also being included in the resource centre.

      The GLCC would be pleased to receive any feedback or suggestions for resources to include. These can be submitted to the secretariat via email at: [email protected]

      [i] The National Lung Screening Trial Research Team, Reduced Lung-Cancer Mortality with Low-Dose Computed Tomographic Screening, N Engl J Med. 2011 Aug 4; 365(5): 395–409.

      Only Members that have purchased this event or have registered via an access code will be able to view this content. To view this presentation, please login, select "Add to Cart" and proceed to checkout. If you would like to become a member of IASLC, please click here.

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    MA07 - Improving Care for People with Lung Cancer: Decision Making, Survivorship, and New Challenges During COVID-19 (ID 167)

    • Event: WCLC 2020
    • Type: Mini Oral
    • Track: Patient Advocacy
    • Presentations: 1
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      MA07.07 - Assessing the Impact of the COVID-19 Pandemic on Patient Advocacy and Support Organisations (ID 3384)

      15:30 - 16:30  |  Presenting Author(s): Matthew Peters

      • Abstract
      • Presentation
      • Slides

      Introduction

      The COVID-19 pandemic has affected all health systems, including lung cancer treatment and care. Patient advocacy and support organisations play an important role in supporting lung cancer patients every day, particularly through challenging times.

      The Global Lung Cancer Coalition (GLCC) is a partnership of 40 patient organisations across 29 countries, dedicated to improving outcomes for lung cancer patients. The GLCC wanted to understand whether the COVID-19 pandemic was affecting the requests patients were making to patient organisations, how organisations were responding, and how the pandemic was affecting their income and ability to provide support to patients.

      Methods

      The GLCC’s steering group designed a 15-question survey examining four themes: changes in the levels of demand from patients; topics on which patients were seeking support; changes to services offered by organisations as a result of the pandemic; and impact on patient organisations’ finances. The online survey was sent to all GLCC members and was open for three weeks between April and May 2020.

      Results

      The survey received 23 responses, with 22 organisations from 21 different countries and one Europe-wide organisation responding. Not every organisation answered each question.

      14 organisations (14/22, 64%) had received more requests from patients since the start of the pandemic. Three quarters (12/16, 75%) had seen an increase in calls to telephone helplines, 11 out of 16 (69%) received more email requests, half (9/16, 56%) saw increases on Facebook and seven out of 16 (44%) received more requests via their website.

      Patients’ most frequently asked questions were on their risk of contracting COVID-19 (19/22, 86%) and implications of treatment delays because of COVID-19 (18/22, 82%).

      Two thirds of organisations (14/21, 67%) had closed some services. Most of these were face-to-face such as seminars, support groups, community outreach programmes and information hubs at hospitals. However, 18 organisations (18/21, 86%) had introduced new digital services including calls to patients or online consultations, as well as extending helpline hours and providing more web content and podcasts.

      Some organisations preferred not to disclose information about the impact of the pandemic on their organisation’s income. Of the 15 organisations that did respond, ten organisations (67%) had seen a decrease in their income since the start of the pandemic. Only five organisations said their national or regional governments were offering support to patient organisations.

      Five organisations (5/20, 25%) were worried about their survival, seven (7/20, 35%) were worried about their ability to provide the same level of services, and nine (9/20, 45%) were worried about being able to employ their staff as they did pre-COVID-19.

      Conclusion

      Patient advocacy and support organisations are providing more support to patients during the pandemic. However, many have seen a decrease in their funding, making it more challenging to do so. Patient organisations need urgent support to continue to meet increased patient needs, and for some to survive.

      Only Members that have purchased this event or have registered via an access code will be able to view this content. To view this presentation, please login, select "Add to Cart" and proceed to checkout. If you would like to become a member of IASLC, please click here.

      Only Active Members that have purchased this event or have registered via an access code will be able to view this content. To view this presentation, please login or select "Add to Cart" and proceed to checkout.