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Sedrak MS, Cohen RB, Merchant RM, Schapira MM. Cancer Communication in the Social Media Age. JAMA Oncol. 2016;2(6):822–823. doi:10.1001/jamaoncol.2015.5475
Copyright 2016 American Medical Association. All Rights Reserved. Applicable FARS/DFARS Restrictions Apply to Government Use.
Twitter, a social networking site, is transforming communication.1 Effective use of Twitter might be one way to communicate with the public about cancer clinical trials and increase awareness and enrollment.2 Studies3 have described cancer content on Twitter but, to our knowledge, none have examined the use of Twitter to share information about cancer clinical trials or to recruit patients for studies. We conducted a content analysis of tweets about lung cancer, described dialogues specific to lung cancer clinical trials, and examined where links embedded in tweets about therapeutic trials are leading the public.
The Twitter search engine found a total of 26 059 tweets containing “lung cancer” from January 5 to 21, 2015. Tweets were captured and prepared using Nvivo qualitative data analysis software (version 10; QSR International Pty Ltd). Excluding 10 713 duplicates, we found 15 346 unique tweets. We selected at random 10% of the tweets (1535). Of these, we excluded 19 non-English tweets. We performed content analysis on our final sample of 1516 tweets and their authors (tweeters).4
Two reviewers read 10% of the tweets (152 of 1516) to create a coding guide. Another 10% of tweets (152 of 1516) were randomly selected to assess interrater reliability by calculating κ scores. The reviewers independently coded the remaining 80% of tweets (1212 of 1516). A third independent reviewer adjudicated discrepancies by consensus.
Tweets were first categorized as either related or unrelated to lung cancer. Tweets identified as unrelated to lung cancer (eg, extraneous content, non sequiturs) were categorized as miscellaneous. Tweets considered related to lung cancer were categorized as shown in Table 1. Profile biographies were used to categorize tweeters as individuals, organizations, or media. Tweets related to clinical trials underwent further analysis to categorize the trial type and embedded links.
The University of Pennsylvania institutional review board (IRB) exempted this study from review.
Most tweets in our sample (83.1% [1260 of 1516]) contained lung cancer–specific content and 16.9% (256 of 1516) were categorized as miscellaneous. Most of the lung cancer-related tweets focused on support (28.4% [358 of 1260]) or prevention (28.3% [357 of 1260]) and were authored by individuals (Table 1).
We found that 17.5% of the tweets in our sample (221 of 1260) were related to clinical trials, most authored by individuals. Of clinical trial tweets, 82.8% (183 of 221) concerned therapeutic trials; 12.7% (28 of 221), nontherapeutic trials; and 4.5% (10 of 221), basic research. Among the therapeutic clinical trial tweets, 78.6% (144 of 183) concerned immunotherapy and 86.3% (158 of 183) had embedded links directing users to news articles. Only 1 tweet linked to a patient recruitment website (Table 2).
Our investigation shows that the use of Twitter for support (28%) and prevention (28%) dialogues is common. Although some tweets are about clinical trials (18%), virtually none are used for recruitment or provide links to enrollment websites. Social media is a rich and promising avenue for exploring how patients conceptualize and communicate about their specific health issues, but its potential to promote cancer clinical trial accrual remains unknown.5 This is a pilot study with a relatively small sample size, and findings are therefore exploratory.
Enrollment into clinical trials is often the best treatment option for patients, but only 2% to 7% of adult cancer patients participate in clinical trials.2 Social media may provide an infrastructure that allows investigators to interact with the public in new ways, including stimulating interest in new clinical trials with targeted messages to connect patients, caregivers, and families with potential trial enrollment websites. Social media could become a very useful tool for clinical researchers but may also pose some challenges with respect to both noncoercive content and the assurance of privacy, both of which the IRBs will need to consider carefully. Future efforts are needed to explore whether Twitter can emerge as a viable medium for promoting accrual to clinical trials.
Corresponding Author: Mina S. Sedrak, MD, MSHP, Perelman Center for Advanced Medicine, University of Pennsylvania, 3400 Civic Center Blvd, 7 S Pavilion, Philadelphia, PA 19104 (Mina.Sedrak@uphs.upenn.edu).
Published Online: March 3, 2016. doi:10.1001/jamaoncol.2015.5475.
Author Contributions: Dr Sedrak had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Study concept and design: Sedrak, Cohen, Merchant, Schapira.
Acquisition, analysis, or interpretation of data: Sedrak, Cohen, Merchant, Schapira.
Drafting of the manuscript: Sedrak.
Critical revision of the manuscript for important intellectual content: Cohen, Merchant, Schapira.
Statistical analysis: Sedrak.
Study supervision: Cohen, Schapira.
Conflict of Interest Disclosures: None reported.
Funding/Support: Dr Merchant has received funding support from NIH K23 (109083) and NIH R01 (HL122457-01A1).
Role of the Funder/Sponsor: The National Institutes of Health had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
Previous Presentation: This paper was presented in part at the 16th World Conference on Lung Cancer; September 16, 2015; Denver, Colorado; and at the ASCO Quality Care Symposium; February 27, 2016; Phoenix, Arizona.
Additional Contributions: We thank Katherine Serrurier, BA, Leat Perez, and Esther Kim, BS, at the University of Pennsylvania, for their data analysis contribution to this work. They received no compensation for their contributions.