@Article{信息:doi 10.2196 / / jmir。3200，作者=“Wittmeier, Kristy and Holland, Cindy and Hobbs-Murison, Kendall and Crawford, Elizabeth and Beauchamp, Chad and Milne, Brodie and Morris, Melanie and Keijzer, Richard”，标题=“家长发起的先天性巨结肠病社交媒体活动分析”，期刊=“J Med Internet Res”，年=“2014”，月=“12”，日=“11”，卷=“16”，数=“12”，页=“e288”，关键词=“先天性巨结肠病;社交媒体;患者导向研究;背景:社交媒体对于受罕见疾病影响的患者或家庭特别有用，因为它允许个人在世界各地形成在线社区。目的:我们在这项研究中的目的是对先天性巨结肠(HD)的社交媒体社区的使用进行描述性和定量分析。方法:2011年7月，一位患有HD的孩子的母亲发起了“Shit Happens”活动。该活动利用社交媒体(博客、Twitter和Facebook)吸引其他受HD影响的家庭。包括谷歌analytics和Facebook Insights在内的互联网分析被用于评估此次活动的覆盖面和响应性。结果:在HD活动启动当天，有387人浏览了“Roo的旅程”博客。 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. ", issn="1438-8871", doi="10.2196/jmir.3200", url="//www.mybigtv.com/2014/12/e288/", url="https://doi.org/10.2196/jmir.3200", url="http://www.ncbi.nlm.nih.gov/pubmed/25499427" }