MA07.07 Assessing the Impact of the COVID-19 Pandemic on Patient Advocacy and Support Organisations

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 Keywords: advocacy, COVID, patient information