@Article{信息:doi 10.2196 / / jmir。5011，作者=“Spencer, Karen and Sanders, Caroline and Whitley, Edgar A and Lund, David and Kaye, Jane and Dixon, William Gregory”，标题=“使用动态同意和研究反馈的数字系统共享匿名个人健康数据的患者观点:定性研究”，期刊=“J Med Internet Res”，年=“2016”，月=“Apr”，日=“15”，卷=“18”，数=“4”，页=“e66”，关键词=“eHealth;数据共享;公众信任;背景:电子健康记录被广泛认为提供了一个重要的机会来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。 To evaluate patient perceptions of a Dynamic Consent model and electronic system to enable and implement ongoing communication and collaboration between patients and researchers. Methods: A total of 26 qualitative interviews and three focus groups were conducted that included a video presentation explaining the reuse of anonymized electronic patient records for research. Slides and tablet devices were used to introduce the Dynamic Consent system for discussion. 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. ", issn="1438-8871", doi="10.2196/jmir.5011", url="//www.mybigtv.com/2016/4/e66/", url="https://doi.org/10.2196/jmir.5011", url="http://www.ncbi.nlm.nih.gov/pubmed/27083521" }