%0杂志文章@ 1438-8871 %I Gunther Eysenbach %V 12% N 2% P e19 %T共享健康数据以获得更好的患者预后%A Wicks,Paul %A Massagli,Michael %A Frost,Jeana %A Brownstein,Catherine %A Okun,Sally %A Vaughan,Timothy %A Bradley,Richard %A Heywood,James %+ PatientsLikeMe公司，研发，155 2nd Street, Cambridge, 02141，美国，1 6172296655，pwicks@patientslikeme.com %K个人健康记录%K数据可视化%K个人监测%K技术%K医疗保健%K自助设备%K个人跟踪%K社会支持%K在线支持小组%K在线健康社区%D 2010 %7 2010年14.06.10 %9原始论文%J J医学互联网Res %G英文%X背景:PatientsLikeMe是一个在线定量个人研究平台，用于患有改变生活的疾病的患者分享他们的经验，使用患者报告的结果，寻找与他们相似的人口统计学和临床特征匹配的其他患者，并从其他人的汇总数据报告中学习，以改善他们的结果。该网站的目标是帮助患者回答以下问题:“鉴于我的状况，我希望获得的最佳结果是什么?我该如何达到这个结果?”目的:通过横断面在线调查，我们试图描述PatientsLikeMe在治疗决策、症状管理、临床管理和结果方面的潜在好处。方法:使用内部调查工具(PatientsLikeMe Lens)向来自6个PatientsLikeMe社区(肌萎缩性侧索硬化症[ALS]、多发性硬化症[MS]、帕金森病、人类免疫缺陷病毒[HIV]、纤维肌痛和情绪障碍)的近7000名成员发送了调查邀请。结果:1323名参与者(占受邀成员的19%)收到了完整的回答。组间人口统计数据因疾病社区而异。用户认为了解他们所经历的症状有最大的好处;72%(1323人中有952人)认为该网站“一般”或“非常有用”。 Patients also found the site helpful for understanding the side effects of their treatments (n = 757, 57%). Nearly half of patients (n = 559, 42%) agreed that the site had helped them find another patient who had helped them understand what it was like to take a specific treatment for their condition. More patients found the site helpful with decisions to start a medication (n = 496, 37%) than to change a medication (n = 359, 27%), change a dosage (n = 336, 25%), or stop a medication (n = 290, 22%). Almost all participants (n = 1,249, 94%) were diagnosed when they joined the site. Most (n = 824, 62%) experienced no change in their confidence in that diagnosis or had an increased level of confidence (n = 456, 34%). Use of the site was associated with increasing levels of comfort in sharing personal health information among those who had initially been uncomfortable. Overall, 12% of patients (n = 151 of 1320) changed their physician as a result of using the site; this figure was doubled in patients with fibromyalgia (21%, n = 33 of 150). Patients reported community-specific benefits: 41% of HIV patients (n = 72 of 177) agreed they had reduced risky behaviors and 22% of mood disorders patients (n = 31 of 141) agreed they needed less inpatient care as a result of using the site. Analysis of the Web access logs showed that participants who used more features of the site (eg, posted in the online forum) perceived greater benefit. Conclusions: We have established that members of the community reported a range of benefits, and that these may be related to the extent of site use. Third party validation and longitudinal evaluation is an important next step in continuing to evaluate the potential of online data-sharing platforms. %M 20542858 %R 10.2196/jmir.1549 %U //www.mybigtv.com/2010/2/e19/ %U https://doi.org/10.2196/jmir.1549 %U http://www.ncbi.nlm.nih.gov/pubmed/20542858