% 0期刊文章% @ 1438 - 8871 V %我JMIR出版物I卡塔尔世界杯8强波胆分析nc . % 16% 12% N P e288 % T分析Parent-Initiated社交媒体活动的巨结肠病% Wittmeier,克里斯蒂%荷兰,辛迪% Hobbs-Murison,肯德尔%克劳福德,伊丽莎白%波,乍得%米尔恩,布罗迪%莫里斯,梅勒妮% Keijzer,理查德·% +外科学系,马尼托巴大学402年AE,温尼伯,Sherbrook街840 MB, R3A 1 s1,加拿大,1 204 787 8854,richardkeijzer@gmail.com %K先天性巨疮病%K社交媒体%K以患者为导向的研究%K知识翻译%D 2014 %7 11.12.2014 %9原创论文%J J医学互联网Res %G英文%X背景:社交媒体可以通过允许个人在世界各地形成在线社区，对受罕见疾病影响的患者或家庭特别有用。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。博客浏览量已超过5400次，来自37个国家。该Facebook页面覆盖了46个国家，平均有298名用户，1414个“赞”，总用户人数为131032人。在撰写本文时，该竞选团队在Twitter上有135名粉丝和344条推文。 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. %M 25499427 %R 10.2196/jmir.3200 %U //www.mybigtv.com/2014/12/e288/ %U https://doi.org/10.2196/jmir.3200 %U http://www.ncbi.nlm.nih.gov/pubmed/25499427

map