March 3, 2016. PHILADELPHIA-- Twitter may be an effective, untapped resource to stimulate interest in cancer clinical trials and boost enrollment, physicians at the Abramson Cancer Center of the University of Pennsylvania suggest in a new research letter in JAMA Oncology. Analyzing thousands of lung cancer tweets on the social media site revealed that a surprisingly large number were about clinical trials, particularly ones on immunotherapy, although none were used for recruitment.
Enrollment into clinical trials can provide promising, new treatment options for patients. But only about five percent of adult cancer patients participate in these studies.
"This is an unsolved societal problem," said Mina S. Sedrak, MD, MS, a fellow in the division of Hematology/Oncology at the Perelman School of Medicine at the University of Pennsylvania and ACC, and lead author of the study. "Twitter provides a promising and novel avenue for exploring how cancer patients conceptualize and communicate about their health, and may have the potential to promote much-needed clinical trial recruitment."
Numerous cancer centers and care organizations actively use Twitter as a platform for health promotion and education, but few studies have examined the existing cancer communication on Twitter and none have examined the extent to which Twitter provides useful information about cancer clinical trials, according to the authors.
In the pilot study, Sedrak and his co-authors analyzed a randomly chosen sample of 1,516 Tweets out of a total of 15,346 unique tweets that contained "lung cancer" from January 5 - 21, 2015, and observed where they lead the public.
Although the majority of tweets analyzed (56 percent) focused on giving and receiving psychological support or dialogues about prevention, the study found that nearly 18 percent (221) of tweets were about clinical trials, 42 percent of which were tweeted by individuals (including self-identified patients, health professionals, advocates, and non-health users).
"We were surprised to see that after dialogues concerning support and prevention, the next largest category of tweets were about clinical trials," Sedrak said. The majority of these clinical trial tweets were about human research involving a drug or a device, and quite a number were focused on the excitement around immunotherapy, which was still investigational at the time of the study. Among the therapeutic clinical trial tweets, 79 percent (144 of 183), in fact, concerned immunotherapy and 86 percent (158 of 183) had embedded links directing users to relevant news articles.
What the study also uncovered was that virtually none of these tweets were used for recruitment nor did they provide links to enrollment websites. Only 1 tweet linked to a patient recruitment website.
Although this work adds to the emerging literature and helps us understand how the public uses Twitter to get information about lung cancer, further efforts are needed to see if Twitter may be a viable method of disseminating health information, which may not only improve treatment and support for cancer patients and survivors, but also enhance public awareness of and enrollment into cancer clinical trials, the authors said.
What's more, social media patient recruitment and retention programs may pose some new challenges to institutional review boards (IRBs) with respect to both non-coercive content and the assurance of privacy. IRBs will need to contemplate appropriate policies on how to review social media recruitment campaigns and address emerging ethical dilemmas inherent to the use of social media and research, the authors said.
"We need to learn more about the ecology of social media, because it is clearly not consistently directing patients to the right places," Sedrak said. "Social media may provide an infrastructure for cancer centers, researchers, and physicians to interact with the public in new and productive ways, including stimulating interest in new clinical trials with targeted messages that connect patients, caregivers, and families with trial enrollment websites. This potential remains largely untapped."
Co-authors of the study include Roger B. Cohen, Raina M. Merchant, and Marilyn M. Schapira, all from Penn.