Social media-based digital health communities (DHCs) play a significant yet poorly understood role in shaping the health experiences of numerous patients and caretakers. Building on the work of the 2020-2021 project team, this team researched digital health communities across a variety of social media platforms to better understand their impacts on patient health. Using primary source materials as well as interviews with DHC community leaders and members, team members identified examples of how community members and their loved ones are benefiting from and being harmed by the health information they’re able to find on social media.

In 2020-2021, the project team cataloged the scale and reach of DHCs on Facebook and began identifying communities with unique instances of supporting members in unusual and/or valuable ways. In 2021-2022, team members continued to explore the 80,000+ DHCs on Facebook and examined communities on additional platforms including Reddit, Twitter, Instagram, TikTok and YouTube.

Timing

Fall 2021–Spring 2022

Team Outputs

The Digital Health Communities Observer

See earlier related team, Crowdsourced Health: Online Patient Communities Enabling Health Innovation (2020-2021).