Background Patients use Facebook as a resource for medical information. We analyzed posts on idiopathic pulmonary fibrosis (IPF)-related Facebook groups and pages for the presence of guideline content, user engagement, and usefulness. Objective The objective of this study was to describe and analyze posts from Facebook groups and pages that primarily focus on IPF-related content. Methods Cross-sectional analysis was performed on a single date, identifying Facebook groups and pages resulting from separately searching “IPF” and “idiopathic pulmonary fibrosis.” For inclusion, groups and pages needed to meet either search term and be in English, publicly available, and relevant to IPF. Every 10th post was assessed for general characteristics, source, focus, and user engagement metrics. Posts were analyzed for presence of IPF guideline content, useful scientific information (eg, scientific publications), useful support information (eg, information about support groups), and potentially harmful information. Results Eligibility criteria were met by 12 groups and 27 pages, leading to analysis of 523 posts. Of these, 42% contained guideline content, 24% provided useful support, 20% provided useful scientific information, and 5% contained potentially harmful information. The most common post source was nonmedical users (85%). Posts most frequently focused on IPF-related news (29%). Posts containing any guideline content had fewer likes or comments and a higher likelihood of containing potentially harmful content. Posts containing useful supportive information had more likes, shares, and comments. Conclusions Facebook contains useful information about IPF, but posts with misinformation and less guideline content have higher user engagement, making them more visible. Identifying ways to help patients with IPF discriminate between useful and harmful information on Facebook and other social media platforms is an important task for health care professionals.

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Background Information regarding idiopathic pulmonary fibrosis (IPF) on the internet is often outdated, inaccurate, and potentially harmful. Twitter is a social media platform that allows users to post content in the form of “tweets”. Objective We sought to assess the prevalence of inaccurate information regarding IPF on Twitter. We hypothesized that foundations and medical organizations would be the least likely to post inaccurate information and that inaccurate tweets would have higher user engagement. Methods All tweets posted between 2011 and 2019 were gathered using “snscrape” on Python 3.8 while searching for the phrase “idiopathic pulmonary fibrosis”. Quantitative analysis was performed to describe trends in IPF-related tweet frequency over time. A subset of tweets made between 2018 and 2019 was screened for verifiable medical statements, which were then analyzed for accuracy compared with contemporary clinical practice guidelines, with descriptive statistics reported. Logistic regression was used to compare tweet accuracy and recommendation of nonindicated therapies across sources, with adjustment for tweet age and character count. Wilcoxon rank-sum tests were used to determine if user engagement (favorites, retweets, and replies) differed between accurate and inaccurate tweets. Results A total of 16,787 tweets were identified between 2011 and 2019. Between 2018 and 2019, 4,861 tweets were included, of which 1,612 (33%) contained verifiable medical statements. Tweets from sources other than foundations or medical organizations were more likely to contain inaccurate information and to recommend nonindicated therapies in both unadjusted and adjusted analyses. News and media sources had the highest odds of communicating potentially harmful information in both adjusted (odds ratio [OR], 12.00; 95% confidence interval [CI], 5.87–27.16) and unadjusted (OR, 11.62; 95% CI, 5.70–26.21) analyses when compared with foundations and medical organizations. Tweets containing inaccurate information had significantly lower numbers of favorites and retweets ( P < 0.001 for both). Conclusion Misinformation regarding IPF is present on Twitter and is more often presented by news and media sources. Medically inaccurate tweets displayed less user engagement than accurate tweets. This differs from findings on IPF-related information on YouTube and Facebook, which may reflect differences in both author and consumer qualities across social media platforms.