Abstract PO-071: Collaborating to share evidence-based COVID-19 information across lung cancer patient advocacy groups
Authors: Moore Amy C. , Freeman-Daily Janet , Norris Kim , Bunn Becky , Baranski Jan , Chin Cristina , Roy Upal Basu 
Published: December 2020

Background: The COVID-19 pandemic has presented an urgent and serious threat to multiple at-risk populations, including those with lung cancer (LC). This rapidly evolving crisis has seen a growing onslaught of information and guidance from multiple sources, much of which is confusing and conflicting. Thus, LC patient advocacy groups (PAGs) in the USA collaborated to share carefully vetted COVID-19 information for LC patients and caregivers online. Our goals were to gather evidence-based information that addressed concerns of LC patients and caregivers, translate it in a manner understandable for the general public, and share it with one voice across all LC nonprofits. This retrospective study examined whether the online LC community found this collaboration valuable and whether the weekly updates addressed useful topics in a trustworthy manner.

Methods: The first “Joint Statement on Coronavirus COVID-19 from Lung Cancer Advocacy Groups” was published on March 3, 2020. Updates were published most Mondays thereafter. We also produced an IASLC podcast. An online survey (conducted over a 5-day period in early June) asked USA LC patients and caregivers (1) if they were aware of the updates, (2) whether they found the updates useful, (3) which topic areas they found most helpful, and (4) what value they saw in the collaboration across LC advocacy groups. We also collected web statistics for each PAGs posts of this content.

Results: Cumulatively, online posts of the weekly updates received over 34,000 views between March 3 and the end of May and reached over 71,000 on Facebook. The podcast received twice the number of listens compared to the average of pre-COVID-19 podcasts on the IASLC and Soundcloud sites. Of the 83 LC patients and caregivers who responded to the online survey, three quarters were dealing with stage III or IV non-small cell LC, and half were older than 60. About 2/3 were aware of the weekly updates, and of those, over 80% found the statements helpful. The five most helpful topics were (1) effect of the pandemic on LC diagnosis, treatment, and clinical trials; (2) effect of the pandemic on LC research; (3) COVID-19 treatments and vaccines; (4) who is likely to have a severe case of COVID-19; and (5) what we know about developing immunity to COVID-19. Based on coding responses from an open-ended question, the majority of respondents found the collaboration valuable and trustworthy (for example, “Increased trust and credibility knowing all orgs are behind it”). The updates were found so valuable that they are also translated into Spanish by a pan-cancer Latin American PAG for their communities.

Conclusions: Lung cancer patients and caregivers, particularly those considered to be at higher risk for severe symptoms or death from COVID-19, found evidence-based, patient-focused collaborative updates about COVID-19 from major lung cancer PAGs informative, helpful, and trustworthy.

Citation Format: Amy C. Moore, Janet Freeman-Daily, Kim Norris, Becky Bunn, Jan Baranski, Cristina Chin, Upal Basu Roy. Collaborating to share evidence-based COVID-19 information across lung cancer patient advocacy groups [abstract]. In: Proceedings of the AACR Virtual Meeting: COVID-19 and Cancer; 2020 Jul 20-22. Philadelphia (PA): AACR; Clin Cancer Res 2020;26(18_Suppl):Abstract nr PO-071.