Editor’s Note: After the U.S. Department of Health & Human Services declared COVID-19 a public health emergency on January 31, 2020, the American Society of Hematology (ASH) was one of the first specialty societies to launch a public-facing resource for its members and their patients. Over the course of those first 12 months, many physician members became key researchers and policy advocates on the treatment and management of this disease. In early May 2023, the World Health Organization announced that COVID-19 was no longer considered a global health emergency. Three years after the onslaught of coronavirus in the U.S., The Hematologist solicited reflections from four of our physician leaders who were central in developing ASH’s response to COVID-19. At the time, Chancellor Donald, MD, was chair of the ASH Committee on Practice; Stephanie Lee, MD, MPH, served as president of ASH; and Laura D. Michaelis, MD, was the editor-in-chief of The Hematologist. Cynthia Dunbar, MD, is the current ASH secretary and a former editor-in-chief of Blood.
Dr. Michaelis: I’m sure it wasn’t the only email I composed late at night and sent off early in the morning on Saturday, March 14, 2020, but it was the first one that I sent. I remember those weeks as anxious ones — partially focused on the unanswered questions about taking care of patients with cancer in the face of this horrific new disease. How big of a problem was this coronavirus going to be at our hospital? How many of our staff and faculty were going to get sick? How can we get a hold of safety protocols being used elsewhere? These and other concerns were running through my head that morning when I sent off the email to ASH President Stephanie Lee, MD, Chief Communications Officer Jenifer Hamilton, and a handful of others — time stamped at 7:58 a.m. Central time:
I was thinking that ASH might be a great resource to collect and distribute a shared resource of tips and tricks during the COVID-19 pandemic....Like I’m sure all of you are, we are all struggling with questions like managing hematology patients on trials, workforce shortages, childcare concerns, how to deploy safe telemedicine, shortages in personal protective equipment, elective chemotherapy, remote transfusions, whose appointments should be cancelled, etc. And we know that patients with hematologic cancers will continue to have all the acute issues that they faced before this pandemic. ... I know this situation is changing rapidly and none of us know what to entirely anticipate, but this seems like a way that ASH could facilitate crowdsourcing solutions for our patients and for our specialty providers.
Dr. Lee: For us, in Seattle, turmoil had been close to home since February 2020. Washington state was the location of the first confirmed case of this new, rapidly spreading viral illness in the U.S. Nationally, eyes turned west when the state made the first announcement of a death from the disease in the U.S. on February 29. The hospital was only a few miles from my younger son’s high school, and his school was the first that I knew of to close their doors and tell the students to stay home.
Laura’s email arrived as I was already working with ASH, brainstorming about what we could do to help our members and the patients they care for. What followed were more digital conversations, planning sessions, weekend telephone calls, and staff recruitment efforts from ASH’s deep bench of technology staff and communications experts. Within five days, ASH launched the ASH COVID-19 Resources webpage with the goal of sorting through quickly evolving data and reports to offer a place where hematologists could get the most accurate information relevant to them. I tried to articulate our initial vision for the webpage in my President’s column, published in the May/June 2020 issue of The Hematologist:
ASH has developed a mechanism to help share useful information about the novel coronavirus with hematologists. This is not the forum to review all that our medical teams have done to prepare for and battle this illness, but it is a way to crowdsource materials and tips on caring for our patients and for one another. It’s a start, and it can be expanded ...1
Initially, we searched, reviewed, and then linked to URLs offering approaches to the initial treatment of patients, management of collateral issues like thromboembolism prevention, and institutional policies about personal protective equipment (PPE) and isolation procedures from medical centers already experiencing the first wave of patients. ASH established a twice-weekly meeting to evaluate information that had been released for and by cancer and hematology centers and selected what was most suitable for dissemination. These meetings included Laura, Cindy, and Chancellor, together with senior ASH staff. Tapping the vast network of content experts in the ASH membership, we recruited more than 150 expert colleagues to provide curbside advice on hematology-related COVID-19 issues, which we called our FAQs (frequently asked questions). I
“I remember those weeks as anxious ones — partially focused on the unanswered questions about taking care of patients with cancer in the face of this horrific new disease.” —Laura C. Michaelis, MD
was the “editor” of the malignant topics, and Cindy handled the classical hematology topics. The most commonly heard questions reflected the remarkable anxieties associated with making treatment decisions without data in a new reality where clinics and hospitals were viewed as potential sources of infection. Should treatments for chronic lymphocytic leukemia be paused or stopped because the risks of exposure and infection are greater than the benefits of therapy? Should consolidation therapy for acute myeloid leukemia continue if it requires hospitalization and raises the risk of needing intensive care? Should individuals get prophylaxis for clotting if they become infected? In the absence of our usual data standards, practitioners wanted to know what experts were doing with their patients.
Dr. Dunbar: I was amazed at how eagerly and rapidly hematologists around the world responded to our request to write FAQs and/or provide other material for the webpage in late March 2020. Looking back at my emails, literally no one I asked said no — even those working in the early hotspots such as Wuhan, northern Italy, and New York City. The busiest, most stressed clinicians taking care of a deluge of patients with insufficient PPE and worried about their own patients and families wrote and edited pieces in their cars, between patients, and even from their own COVID-19– induced quarantines. They were faced with an onslaught of questions from colleagues and local practitioners asking for advice and realized that ASH’s COVID-19 Resources webpage could relieve some of that burden. Several volunteers told me that discussing the questions with their co-authors helped them personally organize their thoughts into a rational, but ever-evolving, approach to helping patients.
Dr. Lee: If stage one of this new project was conceptualization and creation, stage two — beginning roughly in May 2020 — was the establishment of processes to keep the page up to date and to understand how it was being used via page view tracking. We periodically asked the authors of the FAQs to update their documents with new developments or recommendations. I remember when our MPN content experts were able to publicize data from Italy suggesting that higher death rates were observed in patients with myelofibrosis when ruxolitinib was paused rather than continued during management of COVID-19 infection. Through our analytics, it became clear that this effort was being used; page views, a common metric of internet traffic, rose steadily over the first several months, and we even instituted a section for suggestions of new resources.
BY THE NUMBERS
From April 2020 through December 2020, the COVID-19 FAQs had more than 1.38 million pageviews.
In the second half of 2020, more than 480,000 unique users from roughly 190 countries viewed the FAQs.
In the first half of 2021, the COVID resources and FAQs had more than 890,000 pageviews.
Dr. Dunbar: The next significant evolution of the webpage coincided with growing concern accelerated by early case series that suggested that COVID-19 infection was linked to significant morbidity and mortality from thrombosis.
We had frequently updated FAQs in place for management or prevention of thrombosis and worked to align these recommendations with the more formal guideline updates that the ASH Quality team had been developing, based on emerging clinical trials. What we noted, as 2020 progressed, was the growing national recognition of ASH experts as trusted sources of expertise in vascular biology and thrombotic risk and treatment. The website access data received from ASH staff clearly demonstrated that the ASH webpage was a crucial source of information around the world for the most up-to-date recommendations on preventing and treating venous thromboembolism (VTE) in patients with COVID-19.
With the accelerated approval of monoclonal antibodies,
“I was amazed at how eagerly and rapidly hematologists around the world responded to our request to write FAQs and/or provide other material for the webpage in late March 2020.” — Chancellor Donald, MD
vaccinations, and antivirals, the webpage had to incorporate new aspects. Now, we had to provide FAQ documents not only on how to manage patients with blood conditions who were infected with the coronavirus and how to manage the thrombotic risk in COVID-19 disease, but also on how to approach treatment and vaccination in patients with immunosuppression, despite emergency use authorizations from the FDA being based on clinical trials excluding such patients. How should hematologists choose between options or time interventions in specific situations, such as recent anti-B-cell-depleting or -inhibiting therapies? Data published in Blood in early 2021 were a harbinger for concern, as they demonstrated that, in patients with chronic lymphocytic leukemia (CLL), response to the hepatitis vaccine was impaired in those taking Bruton tyrosine kinase (BTK) inhibitors.2 We answered FAQs about approaches to the use of vaccination and available therapies in our patient populations.
On top of that, there were early worries about thrombosis following administration of adenoviral-based COVID-19 vaccines. I am particularly proud of how quickly we were able to recruit thrombosis specialists and assemble an updated, rational source of data on vaccine-induced immune thrombotic thrombocytopenia (VITT). Some of the authors were immediately pulled into FDA and Centers for Disease Control & Prevention discussions as expert consultants.
Dr. Donald: As the chair of the Committee on Practice with a tenure that spanned the pandemic, I felt that one of my roles as a member of the COVID-19 Resources webpage editorial board was to promote the day-to-day needs of our membership. At the onset of the pandemic, it became readily apparent that the delivery of hematologic care occurred in a wide array of settings with different, pressing issues regarding the safe delivery of appropriate care for our patients by providers. I remember advocating strongly for updates on how to manage patients who were reluctant to adhere to masking guidelines or how telemedicine and virtual visits would be reimbursed. The observation that ASH members in community practices are the front lines of our health care apparatus reinforced this experience.
The fractious political environment that accompanied the pandemic was playing out with remarkable intensity in their offices, impacting their ability to care for their patients and staff.
“While the pandemic revealed gaps and realized some of our worst fears, it also revealed strengths and inspiration.” —Laura C. Michaelis, MD
We also found that the regular website editorial board meetings became opportunities for inspiration. In May 2020, ASH hosted a webinar on the use of convalescent plasma. Participating in a program with a few thousand attendees from all over the world, eager to gain and share insight regarding this novel virus, was heartening and rewarding. Many of us also remember listening to the podcasts that accompanied the webpage, which highlighted key concerns — whether it was the need to advocate nationally for patients with cancer, how to manage diseases virtually, or the importance of adding patients to COVID-19 registries.
Dr. Michaelis: Over the course of the last 12 months, ASH has archived most of the COVID-19 Resources webpage. These resources are no longer kept up to date, a practice that proved remarkably difficult with the evolution of disease phenotype due to viral mutations and with rapid and heterogeneous research. Peer-reviewed publications with mature data from randomized clinical trials or large meta-analyses have become available to address clinical questions more appropriately. For anyone interested in the history of the recommendations, however, they are accessible. I think we all can attest that the effort was incredibly educational. I, for one, came to realize the responsibility of having a real-time reference: The work it takes to keep things current is considerable, and the downside of having out-of-date information is substantial. I think we all were also struck by the fact that, in the absence of rigorous data, expert opinion becomes extremely sought-after.
While the pandemic revealed gaps and realized some of our worst fears, it also revealed strengths and inspiration. We needed to lean on each other and learn from one another, resulting in striking cooperation throughout work on the FAQs and other materials produced for the webpage. The normal competitiveness of academic research sometimes inhibits this type of cooperation. ASH, as a professional society, could be nimble and tap into its vast community of hematologists to contribute meaningfully from the earliest days. Before March 2020, I was naïve to the potential of a group like this. But, in the face of this pandemic, ASH was able to provide the infrastructure, expertise, funding, staff, and — maybe most importantly — enthusiasm to link together experts, physicians, and policy-makers in a rapid and highly professional way. I know that I speak for all of us when I say how lucky I feel to have been part of the ASH team during such an unprecedented challenge.
