Digital Health Communities: A Hidden Resource for Shared Healing (2021-2022)

Background

Social media-based digital health communities (DHCs) play a significant yet poorly understood role in shaping the health experiences of numerous patients and caretakers. For example, an estimated 80,000 English-language Facebook groups focus on health topics. The groups range in size from three members to over 2.2 million. They include some of the oldest, most active and most established groups on the platform. 

Digital health communities on social media are changing people’s health outcomes. In many cases, they’re literally saving people’s lives. However, they’ve also created harm through misinformation. In both cases, it’s clear that the powerful new avenues of communication enabled by social media are having significant impacts on patient health and wellness.

Despite the prevalence and importance of these groups, physicians, journalists and academics appear to be mostly uninterested. With just one exception, the New York Times and Washington Post have not covered them. A PubMed search for the patient benefits of Facebook groups returns three relevant articles. None mention the kinds of significant benefits that have been identified and documented in initial research.

Project Description

Building on the work of last year’s project team, this team will research 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 will identify 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.

Last year, 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. Examples of the kinds of communities the team catalogued include:

  • a community based around a disease that helped raise over $1 million for a child suffering from the disease;
  • a community for an orphan disease affecting 3 in 1,000,000 people that was able to convene a conference that brought together the leading experts in the field to push forward new research; and
  • a community that shares information about a rare and deadly disease so patients can share proper treatments with their physicians and better avoid potentially fatal outcomes.

This year, the team will continue to explore the 80,000+ DHCs on Facebook as well as begin to examine communities on additional platforms like Reddit, Twitter, Instagram, TikTok and YouTube.

Anticipated Outputs

Expansion of The Digital Health Communities Observer website

Student Opportunities

Ideally, this project team will include 1 graduate student and 5-6 undergraduate students. Student backgrounds may range from the health and life sciences to the social sciences. We’re particularly interested in students with interests in history and English/literature.

Considering the enormous range of health topics (30,000+), team members will be able to choose topics that interest them and research associated communities across different social media platforms. (Last year, for example, team members explored everything from rare genetic diseases to psychiatric conditions to “body hacking.”)

Student team members will publish up to three articles about their findings per semester in The DHC Observer. All publications will go through a rigorous, professional editorial and copy-editing process to ensure consistency and quality.

The entire project team will meet once per week on Thursdays from 1:45-3:00 p.m. This time will be used to strategize and share research and findings as the project progresses. In addition, participating students will have regular opportunities for one-on-one research mentoring sessions with the team leaders.

Timing

Fall 2021–Spring 2022

  • Fall 2021: Introduce current state of project; provide context for project via core readings; introduction of style and interview guides; begin developing articles
  • Spring 2022: Continue DHC research and creating articles; share/promote research

Crediting

Academic credit available for fall and spring semesters

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

Health community.

Team Leaders

  • Aaron Dinin, Innovation & Entrepreneurship
  • Andrew Landstrom, School of Medicine-Pediatrics

/undergraduate Team Members

  • Isabel Hogshire, Public Policy Studies (AB)
  • Seayoung Lee, Biology (BS)
  • Bella Liu
  • Emily Maceda
  • Rhea Niyyar
  • Claire Wang

/zcommunity Team Members

  • Henry Copeland, PressFlex