Transforming Scientific Inquiry: Tapping Into Digital Data by Building a Culture of Transparency and Consent.
Transforming Scientific Inquiry: Tapping Into Digital Data by Building a Culture of Transparency and Consent.
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DOI：
10.1097/acm.0000000000001022
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发表时间：
2016-04
期刊：
影响因子：
--
通讯作者：
Merchant RM
中科院分区：
文献类型：
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作者：
Smith RJ;Grande D;Merchant RM
超过17亿人使用社交媒体，患者和消费者通过可穿戴设备、智能手机应用程序和社交媒体渠道分享了比以往更多的生活信息。这些丰富的数据为卫生研究人员和临床医生提供了重要的机会，可以跟踪和探索数字存在如何促进患者的健康结果和卫生保健资源的使用。虽然患者很容易与在线社区分享他们的信息，但他们必须保持对谁可以访问这些数据的自主权。最近主要保险公司和零售商的数据泄露事件说明了与信息安全和隐私相关的挑战和漏洞。许多网站和移动应用程序要求用户同意数据政策，但这些数据的挖掘、保护、利用和外部共享方式往往不透明，导致所有数字信息共享论坛的恐惧和不信任气氛。虽然这种怀疑可能是合理的，但它不应阻止卫生研究人员试图收集和分析这些新数据，以设计独特的卫生干预措施。通过澄清数字数据获取的意图，简化同意程序，并肯定对隐私的承诺，作者认为，健康研究人员可以与患者合作，改变科学探究的界限。
With over 1.7 billion individuals engaged in social media, patients and consumers share more about their lives than ever before through wearable devices, smart phone applications, and social media outlets. This cornucopia of data offers significant opportunity for health researchers and clinicians to track and explore how digital presence contributes to patients’ health outcomes and use of health care resources. While patients readily share their information with online communities, it is imperative that they maintain a sense of autonomy over who has access to such data. Recent data breaches of major insurance companies and retailers illustrate the challenges and vulnerabilities related to information safety and privacy. Many Websites and mobile apps require users to agree to data policies, but how those data are mined, protected, utilized, and externally shared is frequently non-transparent, resulting in a climate of fear and distrust around all forums of digital information sharing. While such skepticism is perhaps justified, it should not deter health researchers from attempting to collect and analyze these novel data for the purpose of designing unique health interventions. By clarifying intent around digital data acquisition, simplifying consent procedures, and affirming a commitment to privacy, the authors contend that health researchers can partner with patients to transform the boundaries of scientific inquiry.