Social Media Content of Idiopathic Pulmonary Fibrosis Groups and Pages on Facebook: Cross-sectional Analysis

Abstract

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.

Content Analysis of Idiopathic Pulmonary Fibrosis-related Information on Twitter

“…There is a critical need to better understand the quality of information presented on social media platforms such as Twitter that are increasingly used by patients to both relay and receive information. Similar to what has been reported on other platforms ( 6 , 7 ), we found that Twitter frequently contains inaccurate and sometimes harmful information.…”

“…Inaccurate information was found in 7% of tweets, similar to the findings of a content analysis of posts regarding IPF on Facebook, which found that 5% of posts contained potentially harmful information ( 6 ). These results differ from another study by our group on information regarding IPF on YouTube, in which the frequency of videos recommending nonindicated therapies was 17% ( 7 ).…”

“…We identified medical foundations and organizations, as well as medical users, as prevalent sources of tweets regarding IPF on Twitter. These two sources made up 39% of tweets, as opposed to 10% of posts on Facebook ( 6 ). In contrast to both Facebook and YouTube, inaccurate information also had a significantly lower engagement in the form of favorites and retweets, suggesting that misinformation was less frequently perpetuated by Twitter users ( 6 , 7 ).…”

“…Information regarding IPF on the internet is often outdated, inaccurate, and potentially harmful, as was demonstrated in a review of internet website searches for IPF on Google, Yahoo, and Bing ( 5 ). On the social media platforms Facebook and YouTube, user engagement in the form of views and likes was higher in content containing potentially harmful information ( 6 , 7 ). This propagation of medical misinformation on social media platforms is present in a variety of healthcare topics outside of IPF ( 8 – 11 ).…”

Deep Learning for Identification of Alcohol-Related Content on Social Media (Reddit and Twitter): Exploratory Analysis of Alcohol-Related Outcomes

“…In contrast to hashtags, themed communities on websites such as Reddit represent posts related to exactly 1 topic of interest. Like hashtags, these communities, such as r/cripplingalcoholism , r/depression , or r/opiates Reddit subreddits and HIV Baidu Tieba bar, contain information that can target and understand behavioral health and disease [ 29 - 33 ]. In addition to hashtags and subreddits, some social media platforms allow for geotagging or sharing a user's geographical latitude and longitude coordinates in a post.…”