As oncology researchers around the world race to solve the mysteries about how the novel coronavirus SARS-CoV-2 affects cancer patients, a challenge quickly became apparent: How can they get data fast enough to make the findings relevant to cancer patients in real time?
The answer was simple: Collect information directly from physicians who were treating patients. That’s the argument put forth by the authors of a commentary that was published in Nature Cancer in April 2020.1 In the piece, they use COVID-19 as a case study on the value of crowdsourcing to learn more about a disease.
“Using normal channels, such as looking at cases from your own institution, you could expect to get 10 to 20 cases, and it might take months to gather enough evidence,” said study coauthor Gilberto de Lima Lopes, MD, associate professor of clinical medicine at Sylvester Comprehensive Cancer Center at the University of Miami and the Miller School of Medicine. But by pooling patient data through crowdsourcing, the researchers were able to register more than 1000 cases within 6 weeks.
The use of crowdsourcing in oncology has been increasingly embraced since 2012. The main definition is that such efforts are community-led, and researchers often find subjects through patient forums or in online groups on social media.
The authors pointed out that several successful grassroots projects have already emerged that have captured much-needed data on how and why certain cancer patients are at increased risk of COVID-19 — and how certain groups have used that information to compose more formal guidelines on the management of patients with certain types of cancer.
For example, the American Society of Clinical Oncology launched a registry to collect baseline statistics and follow-up data to assess the ties between COVID-19, cancer treatments, and patient outcomes.2 Also, the American Society of Hematology Research Collaborative (ASH RC) Registry for Hematological Malignancy aims to collect information on such patients with a dual diagnosis.3 That’s in addition to multiple international efforts and consortia — many of which are listed in the Nature Cancer piece.
The use of such techniques is welcome during a crisis like COVID-19, in which there’s an alarming lack of information. And, these concerns can become even more pronounced when new data are released. A recent study out of Hubei province in central China of 641 COVID-19 patients — 105 of whom had cancer — found that those patients with metastatic disease or who had blood or lung malignancies were nearly 3 times more likely to die.4