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
“There’s so much about the COVID-19 story that we don’t know,” said Dr Lopes. “Cancer patients are immunosuppressed because of the disease and because of their treatment. They’re at a higher risk of dying or developing complications.”
The authors pointed out that oncologists still don’t have reliable data on whether chemotherapy or surgery should be postponed for cancer patients to lower their risk of developing COVID-19 or whether immunotherapies would help patients with the coronavirus. Such data will be crucial for guiding treatment, said Dr Lopes. “The main advantage of crowdsourcing is speed. It’s the urgency of the situation.”
While the authors of the Nature Cancer piece collected patient data from doctors, other forms of crowdsourcing involve working directly with patient groups. Yet despite its efficiency, some experts say that researchers need to be aware of possible complications of this increasingly popular research tool.
For example, there’s the potential of selection bias, especially because patients belonging to a group tend to be more engaged in their care. They tend to follow suggested treatment protocols more closely, which has been shown to improve their outcomes. Dr Lopes argues, however, that working with physicians and asking them to enter data on all the patients they see minimizes that risk of bias.
Another pitfall for researchers is parachuting into groups to convince people to share their information, rather than taking the steps that are necessary to build a sense of collaboration among participants, said Gilles Frydman, a crowdsourcing pioneer who created the Association of Cancer Online Resources in 1995. Frydman said he was “deeply involved in creating hundreds of communities with old-fashioned listservs.” (Although some of the listservs still exist, most members have moved to social media groups, such as those found on Facebook, or through another platform called Smart Patients.) “Researchers who come into a community with the single goal of helping their research have the potential of creating a very strong backlash and turning the tone negative,” Frydman said. For example, group members could discredit researchers in the comments or call out their presence as an intrusion. Given that such social communities are intensely loyal, researchers need to be aware of, and sensitive to, a group’s culture before requesting participation in any research initiatives.
For physicians, exercising patience and taking the time to build trust within these types of patient groups pays off. “With a community of patients, there’s no income and no one makes any money, so you end up with communication that is exceptionally honest,” added Frydman.
“I look at these communities as beautiful fragile flowers. It takes a lot of energy to make them and grow them. I think patient-driven research will become more important. There’s tremendous potential for collaborating with a community of engaged, educated patients.”
- Desai A, Warner J. Kuderer N, et al. Crowdsourcing a crisis response for COVID-19 in oncology.[published online April 21, 2020]. Nat Cancer. doi: 10.1038/s43018-020-0065-z
- American Society of Clinical Oncology (ASCO). ASCO survey on COVID-19 in oncology (ASCO) registry. Updated May 1, 2020. Accessed May 6, 2020.
- The American Society of Hematology Research Collaborative (ASH RC). ASH RC COVID-19 registry for hematologic malignancy. Accessed May 5, 2020.
- Mengyuan D, Dianbo L, Miao L, et al. Patients with cancer appear more vulnerable to SARS-COV-2: a multi-center study during the COVID-19 outbreak. Cancer Discov. April 28, 2020.
This article originally appeared on Cancer Therapy Advisor