Dissemination of accurate scientific and medical information was critical during the coronavirus disease 2019 (COVID-19) pandemic, particularly during the early phases when little was known about the disease. Unfortunately, poor science literacy is a serious public health problem, contributing to widespread difficulties in accurately interpreting information and scientific data during the ongoing COVID-19 infodemic.1,2 With the unprecedented demand for research on SARS-CoV-2 and COVID-19 came studies of varying quality, often with conflicting results.
The rheumatology community united during this crisis, forming the COVID-19 Global Rheumatology Alliance (C19-GRA) in March 2020.3 The C19-GRA was founded to collect data, conduct research, and advocate for evidence-based clinical care of patients with rheumatic diseases and COVID-19. A section of the C19-GRA developed plain language summaries (PLS) of published articles in a concise, standardized format to communicate the findings of our research to patients and the public at large. This commentary describes the development of the PLS initiative, which is notably the most visited page on the entire C19-GRA website.
The C19-GRA Patient Directed Summaries Team (PDST) is a group within the C19-GRA alliance that executes the creation of PLS through a virtual network of committed volunteers including C19-GRA members, physicians, researchers, and patient partners. Manuscripts accepted for publication are circulated to the PDST as part of the dissemination process. The PDST creates a PLS through an easily understood, 4-step format highlighting the key findings in the study (what was found), the implications of these findings (what does this mean), a brief description of the background (what it is about), and the methods (what was done). Findings are explained concisely in language without scientific jargon to help facilitate understanding by patients and other nonexperts. PLS are reviewed by the manuscript authors to ensure content accuracy. The summaries are published on the C19-GRA website (https://rheum-covid.org/plain-language-summaries) and disseminated on social media platforms such as X (formerly known as Twitter; Figure 1).
Example of a patient-directed infographic summarizing patient risk factors for worse outcomes from COVID-19 and medications associated with more severe disease, in patients with immune-mediated inflammatory diseases. COVID-19: coronavirus disease 2019; GI: gastrointestinal; GRA: Global Rheumatology Alliance; SECURE-IBD: Surveillance Epidemiology of Coronavirus Under Research Exclusion.
Infographics are an alternative dissemination strategy we use to accompany PLS. Infographics are graphical summaries designed to communicate key study findings using colorful, appealing illustrations that can be quickly and easily consumed; they help improve public engagement in medical research4 and can be posted on social media platforms. An example to summarize the outcomes of COVID-19 in patients with immune-mediated inflammatory diseases assessed by Gianfrancesco et al5 is shown in Figure 2. This graphical summary intends to help patients understand that corticosteroids are medications associated with poorer outcomes in patients with rheumatic diseases who have COVID-19, while highlighting the risk factors that result in worse outcomes. Future directions for the C19-GRA PDST include multiple language translations of PLS to disseminate to non-English speaking populations and the development of video summaries for social media platforms such as TikTok.
Example of the iterative process used to create plain language summaries. COVID-19: coronavirus disease 2019; GRA: Global Rheumatology Alliance; PDST: Patient Directed Summaries Team.
As investigators publish clinical trials and other scientific studies related to COVID-19, we advocate for all COVID-19–related research to be communicated to the public with a goal of providing simple takeaway messages that can be easily understood. We recommend the use of infographics and PLS as innovative methods to explain research findings to patients with rheumatic and nonrheumatic diseases, especially as vaccine hesitancy by the public has been observed and recurrent spikes in COVID-19 cases occur.6 Moving forward, as we grapple with managing COVID-19 in the next phase of the pandemic, the use of these innovative tools to translate research findings can help communicate information, enhance health literacy, ensure adherence to preventive public health behaviors, and reduce vaccine hesitancy. Ultimately, by communicating the results of studies effectively, we can influence how patients understand the research findings, and more importantly, how they use research related to COVID-19 in their own care.
Footnotes
MM and AA contributed equally as co-first authors.
ACR is supported by a Metabolic Skeletal Disorders Training Grant (T32AR060719) through the National Institute of Arthritis and Musculoskeletal and Skin Diseases, outside the submitted work. DPR is employed by Five02 Labs, Inc., which has accepted honoraria from Lilly Canada. DPR volunteers as the Vice President of the Canadian Arthritis Patient Alliance (CAPA), whose majority of support comes from pharmaceutical corporations. RH reports publicly traded stock of AbbVie, Amgen, BMS, GSK, J&J, Eli Lilly, Merck, Novartis, Pfizer, Teva, and UCB. MGM reports disclosures with financial support from J&J, BMS, Aurinia, Lupus Foundation of America, and the Autoimmune Association. ES is a board member of CAPA and C19-GRA. MM receives consulting fees from AstraZeneca. The remaining authors declare no conflicts of interest relevant to this article.
- Copyright © 2024 by the Journal of Rheumatology
