TY - JOUR AU - Joglekar, Sagar AU - Sastry, Nishanth AU - Coulson, Neil S AU - Taylor, Stephanie JC AU - Patel, Anita AU - Duschinsky, Robbie AU - Anand, Amrutha AU - Jameson Evans, Matt AU - Griffiths, Chris J AU - Sheikh, Aziz AU - Panzarasa, Pietro AU - De Simoni, Anna PY - 2018da - 2018/07/11 TI -患有长期疾病的人的在线社区如何运作和演变:网络分析的结构和动力学的哮喘英国和英国肺脏基金会在线社区乔- J地中海互联网Res SP - e238六世- 20 - 7 KW哮喘KW -慢性阻塞性肺病KW -慢性阻塞性肺病KW -网络分析KW -在线社区KW -网上论坛KW -超级KW -自我管理KW -数字医疗社交网络AB -背景:自我管理支持可以改善健康和卫生保健利用率降低患者长期的条件。长期病患者的在线社区有可能影响健康、卫生保健资源的使用，并促进疾病自我管理。然而，直到最近才有证据表明，这些社区是如何运作和发展的，以及它们如何在实践中支持长期条件的自我管理。目的:本研究的目的是通过分析网络的结构和动态来更好地理解在线自我管理支持系统的机制，这些网络连接着撰写帖子的用户。方法:我们对2006-2016年和2012-2016年分别来自英国2个患者在线社区的匿名数据进行了纵向网络分析:Asthma UK和British Lung Foundation (BLF)社区。结果:随着时间的推移，用户数量和活跃度稳步增长，Asthma UK社区达到3345名用户和32780篇文章，BLF社区达到19837名用户和875151篇文章。在Asthma UK论坛发帖的人往往每隔1-20天和6个月写一次，而在BLF社区发帖的人每隔两天写一次。在这两个社区中，大多数用户对可以直接或间接地通过其他用户相互联系。那些写了大量帖子的人(超级用户)占Asthma UK和BLF社区总人口的1%，分别占帖子的32%和49%。 Sensitivity analysis showed that the removal of superusers would cause the communities to collapse. Thus, interactions were held together by very few superusers, who posted frequently and regularly, 65% of them at least every 1.7 days in the BLF community and 70% every 3.1 days in the Asthma UK community. Their posting activity indirectly facilitated tie formation between other users. Superusers were a constantly available resource, with a mean of 80 and 20 superusers active at any one time in the BLF and Asthma UK communities, respectively. Over time, the more active users became, the more likely they were to reply to other users’ posts rather than to write new ones, shifting from a help-seeking to a help-giving role. This might suggest that superusers were more likely to provide than to seek advice. Conclusions: In this study, we uncover key structural properties related to the way users interact and sustain online health communities. Superusers’ engagement plays a fundamental sustaining role and deserves research attention. Further studies are needed to explore network determinants of the effectiveness of online engagement concerning health-related outcomes. In resource-constrained health care systems, scaling up online communities may offer a potentially accessible, wide-reaching and cost-effective intervention facilitating greater levels of self-management. SN - 1438-8871 UR - //www.mybigtv.com/2018/7/e238/ UR - https://doi.org/10.2196/jmir.9952 UR - http://www.ncbi.nlm.nih.gov/pubmed/29997105 DO - 10.2196/jmir.9952 ID - info:doi/10.2196/jmir.9952 ER -