Sharing data for public health research by members of an international online diabetes social network.
Sharing data for public health research by members of an international online diabetes social network.
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DOI：
10.1371/journal.pone.0019256
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发表时间：
2011-04-27
期刊：
影响因子：
3.7
通讯作者：
Mandl KD
中科院分区：
文献类型：
--
作者：
Weitzman ER;Adida B;Kelemen S;Mandl KD
糖尿病的监测和应对可以通过在线糖尿病社交网络（SN）参与同意的研究来加速。我们测试了一个在线糖尿病社区共享公共卫生研究数据的意愿，为成员提供了一个隐私保护的社交网络软件应用程序，用于血糖控制的快速时间-地理监测。SN从国际在线糖尿病患者中收集横截面、成员报告的数据，SN将其输入到我们在“类Facebook”环境中提供的软件应用程序中，以便通过地理显示报告、绘制图表和可选共享最近的血红蛋白A1 c值。来自32个国家和美国50个州的n =6，500名活跃成员中有17%（n =1，136）进行了自主入组。 数据是最新的，83.1%的最近A1 c值报告是在过去90天内获得的。共享率很高，81.4%的用户允许将数据捐赠到社区显示器。34.1%的用户还在SN个人资料页面上显示了他们的A1 c。选择最宽松共享选项的用户的平均A1 c（6.8%）低于不与社区共享的用户（7.1%，p = 0.038）。 95%的用户允许重新联系。美国用户报告的未经调整的A1 c总量与2007-2008年NHANES估计值非常相似（分别为6.9%和6.9%，p = 0.85）。 早期采用者社区的成功表明，在线SN可能包括与疾病人群进行双向通信和从疾病人群获取数据的有效平台。推进这种模型用于队列和转化科学，并用作补充监督方法，将需要理解数据中固有的选择和出版（共享）偏见，以及支持自主性，匿名性和隐私的技术模型。
Surveillance and response to diabetes may be accelerated through engaging online diabetes social networks (SNs) in consented research. We tested the willingness of an online diabetes community to share data for public health research by providing members with a privacy-preserving social networking software application for rapid temporal-geographic surveillance of glycemic control. SN-mediated collection of cross-sectional, member-reported data from an international online diabetes SN entered into a software applicaction we made available in a “Facebook-like” environment to enable reporting, charting and optional sharing of recent hemoglobin A1c values through a geographic display. Self-enrollment by 17% (n = 1,136) of n = 6,500 active members representing 32 countries and 50 US states. Data were current with 83.1% of most recent A1c values reported obtained within the past 90 days. Sharing was high with 81.4% of users permitting data donation to the community display. 34.1% of users also displayed their A1cs on their SN profile page. Users selecting the most permissive sharing options had a lower average A1c (6.8%) than users not sharing with the community (7.1%, p = .038). 95% of users permitted re-contact. Unadjusted aggregate A1c reported by US users closely resembled aggregate 2007–2008 NHANES estimates (respectively, 6.9% and 6.9%, p = 0.85). Success within an early adopter community demonstrates that online SNs may comprise efficient platforms for bidirectional communication with and data acquisition from disease populations. Advancing this model for cohort and translational science and for use as a complementary surveillance approach will require understanding of inherent selection and publication (sharing) biases in the data and a technology model that supports autonomy, anonymity and privacy.
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影响因子：
12.7
作者：
Cobb NK;Graham AL;Abrams DB
通讯作者：
Abrams DB
影响因子：
16.2
作者：
American Diabetes Association
通讯作者：
American Diabetes Association
DOI：
10.1097/med.0b013e32833d4687
发表时间：
2010-10-01
影响因子：
3.2
作者：
Hammond, Ross A.
通讯作者：
Hammond, Ross A.
影响因子：
7.4
作者：
Weitzman ER;Kaci L;Mandl KD
通讯作者：
Mandl KD
影响因子：
120.7
作者：
Yach, D;Hawkes, C;Hofman, KJ
通讯作者：
Hofman, KJ