Poss-Doering Regina, Kunz Aline, Pohlmann Sabrina, Hofmann Helene, Kiel Marion, Winkler Eva C, Ose Dominik, Szecsenyi Joachim
Department of General Practice and Health Services Research, University Hospital Heidelberg, Heidelberg, Germany.
Ethics and Patient-Oriented Care, National Centre for Tumor Diseases, Heidelberg, Germany.
JMIR Form Res. 2018 Aug 3;2(2):e10411. doi: 10.2196/10411.
BACKGROUND: Personal electronic health records (PHR) are considered instrumental in improving health care quality and efficiency, enhancing communication between all parties involved and strengthening the patient's role. Technical architectures, data privacy, and applicability issues have been discussed for many years. Nevertheless, nationwide implementation of a PHR is still pending in Germany despite legal regulations provided by the eHealth Act passed in 2015. Within the information technology for patient-oriented care project funded by the Federal Ministry of Education and Research (2012-2017), a Web-based personal electronic health record prototype (PEPA) was developed enabling patient-controlled information exchange across different care settings. Gastrointestinal cancer patients and general practitioners utilized PEPA during a 3-month trial period. Both patients and physicians authorized by them could view PEPA content online and upload or download files. OBJECTIVE: This paper aims to outline findings of the posttrial qualitative study carried out to evaluate user-reported experiences, perceptions, and perspectives, focusing on their interpretation of PEPA beyond technical usability and views on a future nationwide implementation. METHODS: Data were collected through semistructured guide-based interviews with 11 patients and 3 physicians (N=14). Participants were asked to share experiences, views of perceived implications, and perspectives towards nationwide implementation. Further data were generated through free-text fields in a subsequent study-specific patient questionnaire and researcher's notes. Data were pseudonymized, audiotaped, and transcribed verbatim. Content analysis was performed through the Framework Analysis approach. All qualitative data were systemized by using MAXQDA Analytics PRO 12 (Rel.12.3.1). Additionally, participant characteristics were analyzed descriptively using IBM SPSS Statistics Version 24. RESULTS: Users interpreted PEPA as a central medium containing digital chronological health-related documentation that simplifies information sharing across care settings. While patients consider the implementation of PEPA in Germany in the near future, physicians are more hesitant. Both groups believe in PEPA's concept, but share awareness of concerns about data privacy and older or impaired people's abilities to manage online records. Patients perceive benefits for involvement in treatment processes and continuity of care but worry about financing and the implementation of functionally reduced versions. Physicians consider integration into primary systems critical for interoperability but anticipate technical challenges, as well as resistance from older patients and colleagues. They omit clear positioning regarding PEPA's potential incremental value for health care organizations or the provider-patient relationship. CONCLUSIONS: Digitalization in German health care will continue to bring change, both organizational and in the physician-patient relationship. Patients endorse and expect a nationwide PEPA implementation, anticipating various benefits. Decision makers and providers need to contribute to closing modernization gaps by committing to new concepts and by invigorating transformed roles.
背景:个人电子健康记录(PHR)被认为有助于提高医疗质量和效率,加强所有相关方之间的沟通,并强化患者的作用。技术架构、数据隐私和适用性问题已经讨论多年。尽管2015年通过的《电子健康法》提供了法律规定,但德国全国范围内的PHR实施仍悬而未决。在由联邦教育与研究部资助的面向患者护理的信息技术项目(2012 - 2017年)中,开发了一个基于网络的个人电子健康记录原型(PEPA),以实现患者控制的跨不同护理环境的信息交换。胃肠道癌症患者和全科医生在为期3个月的试验期内使用了PEPA。患者及其授权的医生都可以在线查看PEPA内容并上传或下载文件。 目的:本文旨在概述为评估用户报告的体验、看法和观点而进行的试验后定性研究的结果,重点关注他们对PEPA超出技术可用性的理解以及对未来全国实施的看法。 方法:通过对11名患者和3名医生(N = 14)进行基于半结构化指南的访谈收集数据。参与者被要求分享经验、对感知影响的看法以及对全国实施的观点。在随后的特定研究患者问卷和研究人员笔记中的自由文本字段中生成了更多数据。数据进行了化名处理、录音并逐字转录。通过框架分析方法进行内容分析。所有定性数据使用MAXQDA Analytics PRO 12(版本12.3.1)进行系统化。此外,使用IBM SPSS Statistics Version 24对参与者特征进行描述性分析。 结果:用户将PEPA解释为一个包含数字时间顺序健康相关文档的核心媒介,它简化了跨护理环境的信息共享。虽然患者认为PEPA在德国不久的将来会得到实施,但医生则更为犹豫。两组都相信PEPA的概念,但都意识到对数据隐私以及老年人或残障人士管理在线记录能力的担忧。患者认为参与治疗过程和护理连续性有好处,但担心资金问题以及功能简化版本的实施。医生认为集成到主要系统对互操作性至关重要,但预计会有技术挑战,以及老年患者和同事的抵制。他们未明确说明PEPA对医疗保健组织或医患关系的潜在增量价值。 结论:德国医疗保健领域的数字化将继续带来组织和医患关系方面的变化。患者认可并期望在全国范围内实施PEPA,期待各种好处。决策者和提供者需要通过致力于新概念并激发转变后的角色来缩小现代化差距。
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