“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.

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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.”

References

  1. 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
  2. American Society of Clinical Oncology (ASCO). ASCO survey on COVID-19 in oncology (ASCO) registry. Updated May 1, 2020. Accessed May 6, 2020.
  3. The American Society of Hematology Research Collaborative (ASH RC). ASH RC COVID-19 registry for hematologic malignancy. Accessed May 5, 2020.
  4. 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.