TY -的AU -斯宾塞,凯伦AU -桑德斯,卡罗琳AU -惠特利,埃德加盟——隆德,大卫盟凯,简非盟-迪克逊,威廉·格里高利PY - 2016 DA - 2016/04/15 TI -病人观点分享匿名使用数字系统动态同意个人健康数据和研究反馈:定性研究乔- J地中海互联网Res SP - e66六世- 18 - 4 KW -电子健康KW -数据共享KW -公共信托KW -同意AB -背景:电子健康记录被广泛认为提供了一个重要的机会，可以匿名化患者级的医疗保健数据，并在人群中进行整理，以支持研究。尽管如此，随着公众和政策对数据安全和不当使用的担忧，传统的数据治理方法可能不再足以尊重和保护个人隐私。一种提高透明度和公众信任的解决方案被称为“动态同意”(Dynamic Consent)，它利用信息技术为选择退出提供更明确和更容易获得的机会。在这种情况下，患者可以定制与谁共享数据的偏好，并可以在任何时候可靠地改变他们的偏好。此外，电子系统提供了机会，让患者了解数据接受者和他们的数据所贡献的研究结果。目的:探讨患者对匿名医疗保健数据用于研究目的的看法。评估患者对动态同意模型和电子系统的看法，以实现患者和研究人员之间的持续沟通和协作。方法:共进行了26次定性访谈和3个焦点小组，其中包括一个视频演示，解释匿名电子患者记录在研究中的重用。使用幻灯片和平板设备介绍动态同意系统进行讨论。 A total of 35 patients with chronic rheumatic disease with varying levels of illness and social deprivation were recruited from a rheumatology outpatient clinic; 5 participants were recruited from a patient and public involvement health research network. Results: Patients were supportive of sharing their anonymized electronic patient record for research, but noted a lack of transparency and awareness around the use of data, making it difficult to secure public trust. While there were general concerns about detrimental consequences of data falling into the wrong hands, such as insurance companies, 39 out of 40 (98%) participants generally considered that the altruistic benefits of sharing health care data outweighed the risks. Views were mostly positive about the use of an electronic interface to enable greater control over consent choices, although some patients were happy to share their data without further engagement. Participants were particularly enthusiastic about the system as a means of enabling feedback regarding data recipients and associated research results, noting that this would improve trust and public engagement in research. This underlines the importance of patient and public involvement and engagement throughout the research process, including the reuse of anonymized health care data for research. More than half of patients found the touch screen interface easy to use, although a significant minority, especially those with limited access to technology, expressed some trepidation and felt they may need support to use the system. Conclusions: Patients from a range of socioeconomic backgrounds viewed a digital system for Dynamic Consent positively, in particular, feedback about data recipients and research results. Implementation of a digital Dynamic Consent system would require careful interface design and would need to be located within a robust data infrastructure; it has the potential to improve trust and engagement in electronic medical record research. SN - 1438-8871 UR - //www.mybigtv.com/2016/4/e66/ UR - https://doi.org/10.2196/jmir.5011 UR - http://www.ncbi.nlm.nih.gov/pubmed/27083521 DO - 10.2196/jmir.5011 ID - info:doi/10.2196/jmir.5011 ER -