title: Analysis of a parent-initiated social media campaign for Hirschsprung's disease.
abstract: BACKGROUND
  Social media can be particularly useful for patients or families affected by rare conditions by allowing individuals to form online communities across the world.
  
  
  OBJECTIVE
  Our aim in this study was to conduct a descriptive and quantitative analysis of the use of a social media community for Hirschsprung's Disease (HD).
  
  
  METHODS
  In July 2011, a mother of a child with HD launched the "Shit Happens" campaign. The campaign uses social media (blogs, Twitter, and Facebook) to engage other families affected by HD. Internet analytics including Google Analytics and Facebook Insights were used to evaluate the reach and responsiveness of this campaign.
  
  
  RESULTS
  On the day the HD campaign was launched, 387 people viewed the blog "Roo's Journey". Blog views have now exceeded 5400 views from 37 countries. The Facebook page extends to 46 countries, has an average post reach of 298 users, 1414 "likes", and an overall reach of 131,032 users. The campaign has 135 Twitter followers and 344 tweets at the time of writing. The most common question posted on the Facebook page is related to treatment for extreme diaper rash. Responsiveness assessment demonstrated that within 2 hours of posting, a question could receive 143 views and 20 responses, increasing to 30 responses after 5 hours.
  
  
  CONCLUSIONS
  Social media networks are well suited to discussion, support, and advocacy for health-related conditions and can be especially important in connecting families affected by rare conditions. The HD campaign demonstrates the reach and responsiveness of a community that primarily relies on social media to connect families affected by HD. Although responsive, this community is currently lacking consistent access to evidence-based guidance for their common concerns. We will explore innovative consumer-researcher partnerships to offer a solution in future research.
authors.affiliation: Centre for Healthcare Innovation, University of Manitoba, Winnipeg Regional Health Authority, Winnipeg, MB, Canada.
authors.forename: Kristy
authors.identifier: http://orcid.org/0000-0002-2385-3722
authors.initials: K
authors.lastname: Wittmeier
authors.forename: Cindy
authors.identifier: http://orcid.org/0000-0003-4022-6533
authors.initials: C
authors.lastname: Holland
authors.forename: Kendall
authors.identifier: http://orcid.org/0000-0002-2042-0200
authors.initials: K
authors.lastname: Hobbs-Murison
authors.forename: Elizabeth
authors.identifier: http://orcid.org/0000-0002-3349-8795
authors.initials: E
authors.lastname: Crawford
authors.forename: Chad
authors.identifier: http://orcid.org/0000-0003-1396-0783
authors.initials: C
authors.lastname: Beauchamp
authors.forename: Brodie
authors.identifier: http://orcid.org/0000-0002-1215-3608
authors.initials: B
authors.lastname: Milne
authors.forename: Melanie
authors.identifier: http://orcid.org/0000-0002-1784-4117
authors.initials: M
authors.lastname: Morris
authors.forename: Richard
authors.identifier: http://orcid.org/0000-0002-0108-3157
authors.initials: R
authors.lastname: Keijzer
mesh_terms: D000328:Adult; D002648:Child; D005260:Female; D058015:Health Communication / Q000379:methods*; D006627:Hirschsprung Disease / Q000523:psychology*; D006801:Humans; D020407:Internet; D008297:Male; D010290:Parents; D061108:Social Media; D060756:Social Networking
keywords: Hirschsprung’s Disease; knowledge translation; patient oriented research; social media