Crowdsourcing, Cancer, and COVID-19
By Ryan Nguyen, DO
As an oncology trainee, I have grown accustomed to talking with patients about risks and benefits. Before every cancer treatment, clinical trial, or procedure, we discuss the anticipated risks against what we believe as medical professionals to be benefits.
As I have progressed in my training, these discussions have become routine:
“The main side-effects of this chemotherapy are nausea, increased risk of infection, loose stools…”
“This procedure carries a risk of infection, but we will perform it in a sterile manner to minimize this risk…”
After six months of fellowship, the scripts became part of my knowledge base, and I could easily discuss risks and benefits with most patients. But as COVID-19 cases grew, my patients and I were faced with the prospect of undergoing treatments that could make them more at risk for an infectious disease for which much was unknown and suddenly my scripts on known risks no longer applied.
I was struggling to answer this question: How could cancer doctors have frank discussions with patients about the risk and benefits of cancer treatments when so little was initially known about a rapidly spreading pandemic? I started to participate in an adhoc research collaborative to try to answer this question and get a handle on treating cancer patients in a pandemic.
An idea that began as a tweet soon launched into the COVID-19 and Cancer Consortium (CCC19), which is the largest global registry of cancer patients also diagnosed with COVID-19. Led by Dr. Jeremy Warner (@hemoncwarner) at Vanderbilt University, the CCC19 is an international collaboration of over 100 cancer centers rapidly collecting and disseminating data on the short-term and long-term impact of COVID-19 on the care and outcomes of patients with cancer.
The first findings of the CCC19 were published in The Lancet and presented at the 2020 ASCO Annual Conference and brought data to our concerns. Patients with cancer and COVID-19 were at a particularly high-risk of morbidity and mortality, particularly those who were older, had a higher number of comorbidities, or had active cancer. These results have catalyzed the cancer community to make every effort to protect our patients from COVID-19.
Chicago medical centers are well represented in CCC19, with members institutions including the University of Illinois at Chicago, Northwestern University, University of Chicago, Loyola University, Rush, and Cook County Health. CCC19 has also sparked working groups looking into disease site specific outcomes such as breast cancer or myeloma as well as crucial issues such as racial and ethnic disparities.
My short time in oncology training has taught me that cancer waits for no one. The disease continues its often relentless path, ignoring birthdays, holidays, life’s plans, and above all, a global pandemic.
I have already seen patients presenting with complications from the unrelenting march of cancer - from treatments delayed, imaging held, appointments postponed - all due to the fear of catching COVID-19. I have also seen first-hand the devastation of COVID-19 on those with cancer, bodies already weakened from cancer and its treatments.
I am proud to be a contributing member of the CCC19. This grassroots effort has spurred collaboration between cancer centers across the US as well as globally. Working groups within CCC19 are exploring how COVID-19 is affecting care for specific cancer types, trends in complications, and racial and ethnic disparities in clinical outcomes. As an oncology trainee, I am inspired to see so many cancer professionals working together for the betterment of our patients. The rapid collection and dissemination of data and best practices will benefit countless patients with cancer who do not have the luxury of time.