Experts share insights and pitfalls in digital outreach and engagement at the annual Collaboration for Outcomes Using Social Media in Oncology meeting.
How to create meaningful engagement while combating cancer misinformation was the focus of multiple addresses and roundtables at this year’s Collaboration for Outcomes Using Social Media in Oncology meeting.
COSMO, which was formed in 2015 by Don Dizon, MD, professor of medicine and of surgery and head of community outreach and engagement at Brown’s Legorreta Cancer Center, and Deanna Attai, MD, associate clinical professor of surgery at the David Geffen School of Medicine at the University of California Los Angeles, used the conference to discuss the benefits of leveraging social media platforms for oncology. It’s something keynote speaker Jeremy Warner, MD, MS, associate director of data science at the Legorreta Cancer Center, understands well. Warner is the director of the COVID-19 and Cancer Consortium (CCC-19), a consortium of more than 120 cancer centers and other organizations collecting data on cancer patients diagnosed with COVID-19. As patients with cancer are often immunocompromised, treatments can make them prone to infections, and there was a great need to understand the intersection of cancer and COVID-19. Prior to 2020, however, there was no singular organization dedicated to collecting research across various institutions.
This all changed with a single message on Twitter from Aakash Desai, MBBS, MPH, assistant professor of medicine at the O’Neal Cancer Center at the University of Alabama Birmingham. His tweet on March 13, 2020, pointed to research from China that demonstrated patients with current or previous cancer diagnoses were at greater risk of severe events like invasive ventilation or death. He put out a call to collaborate to survey data and provide updates on effective risk mitigation strategies, and his message quickly gained steam.
“Desai had maybe hundreds of followers, but the key is that he tagged people that he did not know personally,” said Warner, a professor of biostatistics and of medicine. Among those tagged included the profiles of the American Society of Clinical Oncology. “Each of them had thousands of followers. They retweeted and this went broad and wide.”
Within days, messages circulated among clinicians at various institutions to build a database on cancer patients diagnosed with COVID-19. Soon a “community of interest” was built from the ground up using other social media platforms, tools like Google Sheets, and email blasts. Within the coming months, Warner united with an international team of clinicians and researchers, which created everything from a logo to governance documents, a code of conduct, data models, and a steering committee.
The expansion and success of CCC-19, which accrued nearly 20,000 cases when it closed its registry a few years later, was a result of the “socialization” of the group, Warner said. However, during its first few weeks, the number of participating institutions outpaced submitted cases, and Warner said they were ready to give up until they changed strategies.
“We wanted to get people to not just express enthusiasm, but to actually give data,” Warner said. “We started socializing the idea. We went out and we wrote editorials about what we were doing, we contacted the oncology media, we did podcast interviews, all of these kinds of things.”
Warner said one of the founding principles was not to reinvent the wheel. Using existing strategies to achieve consensus while utilizing freely available tools and social media platforms were major drivers of the group’s spread.
“We did our best to channel the spirit of Samuel Slater,” Warner said, referring to the industrialist known as the Father of the American Revolution who designed Slater Mill in Pawtucket, RI, which was America’s first water powered textile mill and controversially took its technology from British mills,
However, online engagement among oncologists also demonstrates other challenges with combating disinformation. Stacy Loeb, MD, MSc, a professor at New York University and a urologist at the Manhattan Veterans Affairs Medical Center, found widespread misinformation about prostate cancer when her team analyzed English- and Spanish-language posts across different platforms—including more than 40 percent of the top posts on YouTube, Instagram, and TikTok.
A multifaceted solution is essential to combat false or misleading information, she said.
“There needs to be engagement from all kinds of stakeholders in this situation,” Loeb said, such as digital health care providers and community health workers who can assist with awareness campaigns and promote health literacy. “Health care systems need to do community outreach and be more welcoming, especially to groups who have been historically marginalized.”
Eleonora Teplinsky, MD, head of Breast and Gynecologic Medical Oncology at Valley-Mount Sinai Comprehensive Cancer Care and conference co-chair alongside Martina Murphy, MD, associate professor of medicine in the Division of Hematology and Oncology at the University of Florida, said digital opinion leaders often focus on brands rather than education, can amplify messages from oncologists and other physicians. Having a large reach is good, but the number of followers isn’t everything, Teplinsky said.
“You may have influenced three people to get a mammogram and that’s huge,” she said.
She cautioned against compromising oneself professionally by giving out medical advice and stressed understanding institutional and government policies to avoid potential liabilities or damage to reputation. Disclosures of connections and partnerships are also paramount to maintaining trust among digital opinion leaders and nurturing a community, but Teplinsky argued that improved regulations are needed to help combat misinformation spreading among those with a broad digital reach.
“Digital opinion leaders will serve as a vital resource. There’s no way around that, but we need guidelines and guardrails,” she said. “We need regulations that are going to help the public trust us and be able to do this with trust and not fear of liability.”
