Apart from the high transmission rate globally, the coronavirus disease 2019 (COVID-19) pandemic has seen a record number of clinical studies registered on ClinicalTrials.gov. From January 2020 to May 2020, there have been 17,998 published articles and 4385 preprints related to COVID-19.1However, the feasibility and accuracy of these research studies have raised questions among the scientific and medical communities. Pandemic research exceptionalism has threatened the validity of COVID-19 literature and created a stream of misinformation to patients as well.1
According to the authors of a research ethics article2 published in May 2020, “…the moral mission of research remains the same: to reduce uncertainty and enable caregivers, health systems, and policy-makers to better address individual and public health.” They added that it was important that researchers responsibly maintain their standard of conducting and publishing high-quality investigations during the pandemic.
A recent review by Duron and colleagues1 has brought to light the challenges that rheumatologists face in appraising high-quality, accurate, and relevant research amid the exponential volumes of published clinical literature associated with COVID-19.
We spoke with the study authors, Michael Putman, MD, assistant professor at Medical College of Wisconsin in Milwaukee and medical advisor to CreakyJoints, and Lauren Gelman, MS, director of editorial services at CreakyJoints and the Global Healthy Living Foundation, to get further insight into the challenges faced by rheumatologists in understanding literature pertaining to COVID-19 and how appropriate resources can be identified, disseminated, and the information communicated to patients with rheumatic diseases.
Can you tell us more about your recent paper on the challenges faced by rheumatologists with regard to COVID-19 literature? How is this study relevant today?
Michael Putman, MD: Our suggestions [on how to read studies critically] have become even more relevant. Since we penned our paragraph about the limitations of the COVID-19 literature, large studies have been retracted and come under the fire. The literature (and misinformation) has also grown dramatically. Identifying good information is more relevant now than ever.
Lauren Gelman, MS: Patients continue to make important life decisions, such as whether to send their children to reopening schools or go back to work, based on what they are reading online and hearing on the news. Thus, the rheumatologist continues to play a critical role as an advisor to patients, helping them understand how the latest information about COVID-19 [affects] them personally, based on their health conditions, comorbidities, and other personal circumstances.
How are these challenges unique to rheumatology practices?
Dr Putman: Rheumatology has been uniquely affected [by the pandemic] because COVID-19 appears to cause an inflammatory state. Consequently, our medications, including steroids, hydroxychloroquine, [interleukin] (IL)-6 inhibitors, and IL-1 inhibitors, have been the focus of offlabel prescribing and substantial research efforts.1
Lauren Gelman: Rheumatology patients have unique concerns about how their health conditions [affect] their risk for COVID-19 infection and complications. They may hear that their therapies being described as “immunocompromising,” but need to understand what that means in the context of their personal health and medical history. Some rheumatic disease therapies, such as hydroxychloroquine and IL-6 inhibitors, have been widely discussed in the news and this may raise more questions about what that means for patients’ risks for COVID-19.
[In addition], many patients [with rheumatologic conditions] see their providers regularly (every 3-6 months) and require in-person treatment, such as injections and infusions, and so they have had another set of concerns about the safest ways to see their providers right now (in-person vs telehealth visits).
Rheumatologists can help address the very specific and personal questions patients may have that they really may not be able to readily find on the internet or hear about when they are consuming local news.
How can rheumatologists identify appropriate resources – in terms of accuracy, credibility, and relevance – to guide disease management?
Lauren Gelman: Rheumatologists can make sure to send patients to trusted and relatable online sources for more information. Patient advocacy groups like CreakyJoints and others are working hard to ensure rheumatology patients find information that answers their specific questions and concerns.
What advice can rheumatologists provide to their patients regarding the misinformation of COVID-19?
Dr Putman: Trust in reliable sources. The sources we shared [in our paper] have been generating information upon which you can rely.
Lauren Gelman: The scientific information about COVID-19 is proliferating at such a rapid pace and what you read online or hear about on the news may not be the full story, the final word, or the most up-to-date information. Rheumatologists can reassure patients that they can rely on their providers to help them understand how news updates about COVID may relate to them personally.
CreakyJoints and the Global Healthy Living Foundation have been working hard to get the message across to patients, for example, that they should not make any adjustments to their treatment or medications without discussing it with their providers.
- Duron G, Gelman L, Dua A, Putman M. Tracking clinical resources for coronavirus disease 2019. Curr Opin Rheumatol. 2020;32(5):441-448.
- London AJ, Kimmelman J. Against pandemic research exceptionalism. Science. 2020;368(6490):476-477.