Children's Hospital Informatics Program at the Harvard-MIT Division of Health Sciences and Technology, Children's Hospital Boston, Boston, Massachusetts, USA.
J Am Med Inform Assoc. 2011 May 1;18(3):292-7. doi: 10.1136/jamia.2010.009712. Epub 2011 Jan 24.
To foster informed decision-making about health social networking (SN) by patients and clinicians, the authors evaluated the quality/safety of SN sites' policies and practices.
Multisite structured observation of diabetes-focused SN sites. Measurements 28 indicators of quality and safety covering: (1) alignment of content with diabetes science and clinical practice recommendations; (2) safety practices for auditing content, supporting transparency and moderation; (3) accessibility of privacy policies and the communication and control of privacy risks; and (4) centralized sharing of member data and member control over sharing.
Quality was variable across n=10 sites: 50% were aligned with diabetes science/clinical practice recommendations with gaps in medical disclaimer use (30% have) and specification of relevant glycosylated hemoglobin levels (0% have). Safety was mixed with gaps in external review approaches (20% used audits and association links) and internal review approaches (70% use moderation). Internal safety review offers limited protection: misinformation about a diabetes 'cure' was found on four moderated sites. Of nine sites with advertising, transparency was missing on five; ads for unfounded 'cures' were present on three. Technological safety was poor with almost no use of procedures for secure data storage and transmission; only three sites support member controls over personal information. Privacy policies' poor readability impedes risk communication. Only three sites (30%) demonstrated better practice. Limitations English-language diabetes sites only.
The quality/safety of diabetes SN is variable. Observed better practice suggests improvement is feasible. Mechanisms for improvement are recommended that engage key stakeholders to balance autonomy, community ownership, conditions for innovation, and consumer protection.
通过患者和临床医生来促进对健康社交网络（SN）的知情决策，作者评估了 SN 网站政策和实践的质量/安全性。
对以糖尿病为重点的 SN 网站进行多站点结构化观察。测量了 28 个质量和安全指标，涵盖：（1）内容与糖尿病科学和临床实践建议的一致性；（2）审核内容、支持透明度和 moderation 的安全实践；（3）隐私政策的可及性以及隐私风险的沟通和控制；（4）成员数据的集中共享和成员对共享的控制。
10 个网站的质量参差不齐：50%与糖尿病科学/临床实践建议一致，但在使用医疗免责声明（30%有）和指定相关糖化血红蛋白水平（0%有）方面存在差距。安全性参差不齐，外部审查方法（20%使用审核和关联链接）和内部审查方法（70%使用 moderation）存在差距。内部安全审查提供的保护有限：在四个被 moderation 的网站上发现了关于糖尿病“治愈”的错误信息。在有广告的九个网站中，有五个透明度缺失；三个网站有未经证实的“治愈”广告。技术安全较差，几乎没有使用安全数据存储和传输的程序；只有三个网站支持成员对个人信息的控制。隐私政策可读性差，阻碍了风险沟通。只有三个网站（30%）表现出更好的实践。局限性仅为英语糖尿病网站。
糖尿病 SN 的质量/安全性参差不齐。观察到的更好实践表明改进是可行的。建议采用改进机制，让关键利益相关者参与其中，以平衡自主性、社区所有权、创新条件和消费者保护。
