JMIR Publications

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 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 tenth post was assessed for general characteristics, source, focus, and user engagement metrics. Posts were analyzed for presence of IPF guideline content, useful scientific information (e.g. scientific publications), useful support information (e.g. 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. Post source was most commonly non-medical 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 IPF patients discriminate between useful and harmful information on Facebook and other social media platforms is an important task for healthcare professionals.