Social media is an integral part of medicine, and an increasingly important conduit for sharing information about clinical trials. In an article in JCO Clinical Cancer Informatics, researchers from SWOG Cancer Research Network pose provocative questions aimed at sparking discussion and creating consensus on how cancer clinical trial stakeholders can best interact on social platforms.
Written by members of SWOG's digital engagement committee, the article notes the growing role that platforms like Facebook and Twitter play in raising awareness about trials and boosting their accrual. This significant promise - to make trials a larger part of the cancer care conversation and to make them more inclusive - is matched by significant legal, ethical, and logistical challenges for patients, researchers, institutional review boards, and trial sponsors.
According to the authors, these challenges include the risk of misinformation, the possibility of unblinding treatments used in trials, and the lack of clarity around regulatory oversight of social media content. What social content regarding cancer trials requires institutional review board approval before posting?
"With this article, we're raising the question: How can we best use social media to talk about cancer trials in ways that are meaningful, ethical, and engaging to every stakeholder?" said Krishna Gunturu, MD, a SWOG digital engagement team member, an oncologist with Lahey Hospital and Medical Center, and the lead author of the article. "To realize the potential of social media as a cancer trial educator and equalizer, we need consensus."
Specifically, the SWOG team asks:
"These are key questions, and we need to come together as a cancer clinical trial community to arrive at answers," said study co-author and SWOG Digital Engagement Committee Chair Don Dizon, MD, a professor of medicine at the Warren Alpert Medical School of Brown University and a member of the Lifespan Cancer Institute. "Our goal is to call everyone with a stake in cancer trials to action so we can use social media as a tool to advance cancer research."
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Along with Gunturu and Dizon, the SWOG team who authored the article includes: Judy Johnson, MBA, SWOG lung cancer committee patient advocate; Anne Marie Mercurio, PA, SWOG digital engagement committee patient advocate; Ginny Mason, BSN, SWOG breast cancer committee patient advocate; Dana B. Sparks, MAT, SWOG director of operations and protocols; Wendy Lawton, MA, SWOG communications manager and digital engagement staff liaison; and Jennifer R. Klemp, PhD, MPH, MA, an associate professor of medicine and director of cancer survivorship at the University of Kansas Medical Center.
The National Institutes of Health supported the work through the National Cancer Institute under grant awards CA180888 and CA189974.
SWOG Cancer Research Network is part of the National Cancer Institute's National Clinical Trials Network and the NCI Community Oncology Research Program, and is part of the oldest and largest publicly-funded cancer research network in the nation. SWOG has nearly 12,000 members in 47 states and six foreign countries who design and conduct clinical trials to improve the lives of people with cancer. SWOG trials have led to the approval of 14 cancer drugs, changed more than 100 standards of cancer care, and saved more than 3 million years of human life. Learn more at swog.org .