Crowdsourcing Data on Cancer and COVID-19

COVID-19 was declared a pandemic in March, marking a distinct change in daily life. With nearly 4.5 million diagnosed cases worldwide, it is no wonder people are concerned about the future impact. Yet an understanding of the virus also changes almost daily, making it difficult for doctors to understand how it affects specific populations. So how can doctors understand the relationship between cancer and COVID-19? Further, how can they use data to improve patient outcomes and better advise patients?

According to Cancer Therapy Advisor, crowdsourcing data straight from doctors might be the answer. At least, it’s a potential option put forward by researchers in Nature Cancer. But the next step is exploring how crowdsourcing might help, its efficacy, and what data it can provide about cancer and COVID-19.

What is Crowdsourcing?

Investopedia defines crowdsourcing as:

obtaining work, information, or opinions from a large group of people who submit their data via the Internet, social media, and smartphone apps.

So, in the case of cancer and COVID-19, doctors would share patient data (or even ask patients to participate in forums or discussions) to understand more about the virus. In the Nature Cancer study, crowdsourcing allowed researchers to register and examine over 1,000 COVID-19 diagnoses over a 1.5 month period. Comparatively, this offers extremely quick access to data.

Cancer and COVID-19

Sourcing and analyzing this data allows researchers to advocate for better patient treatment and cancer management. For example, after collecting data on cancer, COVID-19, treatments, and patient outcomes, the American Society of Clinical Oncology (ASCO) offered updated oncological recommendations. These include that:

  • All cancer diagnoses and prognoses should be considered individually, particularly in the case of resource allocation.
  • A fair and consistent prioritization and allocation policy should be developed before allocation becomes necessary.

The American Society of Hematology Research Collaborative Registry for Hematological Malignancy also looks to collect and analyze data.

Why is this data needed?

Well, people currently don’t know a lot about COVID-19 or its impacts on certain populations. Early in the pandemic, there seemed to be no relationship between cancer and COVID-19. Now, data from Hubei, China suggests a different story. 105 of 641 patients with COVID-19 also had cancer. These patients were 3x more likely to have severe, fatal reactions to COVID-19.

Ultimately, COVID-19 knowledge is still developing. Those with co-morbidities, or who are immunosuppressed or taking immunosuppressants, are believed to be more at risk of a severe COVID-19 infection. Yet the truth is that nobody understands the condition enough to know for sure.

Thus, crowdsourcing data allows for researchers to quickly receive studies and data that provide additional insight. Ultimately, understanding survivals vs. fatalities, or whether chemotherapy or surgery heightens risk factor, will inform patient care moving forward.

Potential Issues with Crowdsourcing Cancer and COVID-19 Data

Although crowdsourcing offers many benefits, there are some potential ethical issues. First, physician-sourced data and data sourced from patient advocacy groups may differ. Patients in advocacy groups are often more involved and practice better adherence. So for reliability, doctors would need to submit all patient data.

However, this potentially prevents patient cooperation. Patients may feel that doctors or researchers are using their data for personal gain. To stop the feeling of intrusion, it is recommended that:

researchers…be aware of, and sensitive to, a group’s culture before requesting participation in any research initiatives.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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