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通过选择性可信电子健康记录交换服务增强患者隐私控制:医学专业人员和患者观点的定性研究

Enhancing Privacy Controls for Patients via a Selective Authentic Electronic Health Record Exchange Service: Qualitative Study of Perspectives by Medical Professionals and Patients.

作者信息

Alaqra Ala Sarah, Fischer-Hübner Simone, Framner Erik

机构信息

Privacy and Security Research Group, Department of Computer Science, Karlstad University, Karlstad, Sweden.

Department of Information Systems, Karlstad University, Karlstad, Sweden.

出版信息

J Med Internet Res. 2018 Dec 21;20(12):e10954. doi: 10.2196/10954.


DOI:10.2196/10954
PMID:30578189
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6322916/
Abstract

BACKGROUND: Patients' privacy is regarded as essential for the patient-doctor relationship. One example of a privacy-enhancing technology for user-controlled data minimization on content level is a redactable signature. It enables users to redact personal information from signed documents while preserving the validity of the signature, and thus the authenticity of the document. In this study, we present end users' evaluations of a Cloud-based selective authentic electronic health record (EHR) exchange service (SAE-service) in an electronic health use case. In the use case scenario, patients were given control to redact specified information fields in their EHR, which were signed by their doctors with a redactable signature and transferred to them into a Cloud platform. They can then selectively disclose the remaining information in the EHR, which still bears the valid digital signature, to third parties of their choice. OBJECTIVE: This study aimed to explore the perceptions, attitudes, and mental models concerning the SAE-service of 2 user roles: signers (medical professionals) and redactors (patients with different technical knowledge) in Germany and Sweden. Another objective was to elicit usability requirements for this service based on the analysis of our investigation. METHODS: We chose empirical qualitative methods to address our research objective. Designs of mock-ups for the service were used as part of our user-centered design approach in our studies with test participants from Germany and Sweden. A total of 13 individual walk-throughs or interviews were conducted with medical staff to investigate the EHR signers' perspectives. Moreover, 5 group walk-throughs in focus groups sessions with (N=32) prospective patients with different technical knowledge to investigate redactor's perspective of EHR data redaction control were used. RESULTS: We found that our study participants had correct mental models with regard to the redaction process. Users with some technical models lacked trust in the validity of the doctor's signature on the redacted documents. Main results to be considered are the requirements concerning the accountability of the patients' redactions and the design of redaction templates for guidance and control. CONCLUSIONS: For the SAE-service to be means for enhancing patient control and privacy, the diverse usability and trust factors of different user groups should be considered.

摘要

背景:患者隐私被视为医患关系的关键要素。在内容层面,一种用于用户控制数据最小化的隐私增强技术示例是可编辑签名。它使用户能够从签署的文档中编辑个人信息,同时保持签名的有效性,进而确保文档的真实性。在本研究中,我们展示了终端用户对电子健康用例中基于云的选择性认证电子健康记录(EHR)交换服务(SAE服务)的评估。在该用例场景中,患者能够控制编辑其电子健康记录中的特定信息字段,这些字段由医生使用可编辑签名签署,并传输到云平台。然后,他们可以有选择地向其选择的第三方披露电子健康记录中仍带有有效数字签名的其余信息。 目的:本研究旨在探究德国和瑞典两个用户角色(签署者(医疗专业人员)和编辑者(具有不同技术知识的患者))对SAE服务的认知、态度和心智模型。另一个目的是基于对调查的分析得出该服务的可用性要求。 方法:我们选择实证定性方法来实现研究目标。在对来自德国和瑞典的测试参与者进行的研究中,服务原型设计被用作以用户为中心的设计方法的一部分。我们与医务人员进行了总共13次个人演练或访谈,以调查电子健康记录签署者的观点。此外,还在焦点小组会议中与32名具有不同技术知识的潜在患者进行了5次小组演练,以调查编辑者对电子健康记录数据编辑控制的观点。 结果:我们发现研究参与者对编辑过程有正确的心智模型。一些具有技术模型的用户对编辑后文档上医生签名的有效性缺乏信任。需要考虑的主要结果是关于患者编辑责任的要求以及用于指导和控制的编辑模板设计。 结论:为使SAE服务成为增强患者控制权和隐私的手段,应考虑不同用户群体的各种可用性和信任因素。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/b32e65b4ab20/jmir_v20i12e10954_fig11.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/e7840cdf9f06/jmir_v20i12e10954_fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/64f244347e40/jmir_v20i12e10954_fig2.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/b814b47a4eb4/jmir_v20i12e10954_fig3.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/63b72484dbcd/jmir_v20i12e10954_fig4.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/1001da98d8eb/jmir_v20i12e10954_fig5.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/37b2d6587760/jmir_v20i12e10954_fig6.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/08093bbb22ae/jmir_v20i12e10954_fig7.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/e2e0b8742f78/jmir_v20i12e10954_fig8.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/b4a017f31d11/jmir_v20i12e10954_fig9.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/f0bdcb3ec043/jmir_v20i12e10954_fig10.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/b32e65b4ab20/jmir_v20i12e10954_fig11.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/e7840cdf9f06/jmir_v20i12e10954_fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/64f244347e40/jmir_v20i12e10954_fig2.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/b814b47a4eb4/jmir_v20i12e10954_fig3.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/63b72484dbcd/jmir_v20i12e10954_fig4.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/1001da98d8eb/jmir_v20i12e10954_fig5.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/37b2d6587760/jmir_v20i12e10954_fig6.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/08093bbb22ae/jmir_v20i12e10954_fig7.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/e2e0b8742f78/jmir_v20i12e10954_fig8.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/b4a017f31d11/jmir_v20i12e10954_fig9.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/f0bdcb3ec043/jmir_v20i12e10954_fig10.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c14/6322916/b32e65b4ab20/jmir_v20i12e10954_fig11.jpg

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