Baron von Osthoff Marc, Watzlaw-Schmidt Ute, Lehmann Thomas, Hübner Jutta
Fakultät Medien, Hochschule Mittweida, Technikumplatz 17, 09648, Mittweida, Deutschland.
Palliativstützpunkt Hameln-Pyrmont, Hameln, Deutschland.
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2022 Nov;65(11):1197-1203. doi: 10.1007/s00103-022-03589-w. Epub 2022 Sep 23.
People in Germany are very sensitive about their health data. The electronic health record (ePA) also raises questions about the patient's need for data sovereignty and acceptance. The possibility of selectively withholding data stored in the ePA from physicians who continue to treat the patient (opt-out) and the patient's prior knowledge of the ePA could influence the need for data sovereignty and acceptance of the ePA. The aim of this explorative study is to investigate these influences for three patient groups: "acute patients," "diabetes type 2 patients," and "palliative patients," as differences are expected between these groups.
From August to October 2019, a quantitative survey was conducted among 140 patients in the abovementioned groups.
Of the respondents, 76.0% supported the selective opt-out option and stated that this would increase their willingness to participate in the ePA. Specifically, 81.1% of acute care patients, 80.6% of palliative care patients, and 65.6% of type 2 diabetes patients made this statement. Differences between groups were not significant. A general prior knowledge of the ePA was related to a higher need for data sovereignty - 43.2% of those who had never heard of the ePA rollout would occasionally hide their health data from other physicians, compared with 54.5% who knew of the rollout.
Consideration of the data sovereignty needs of patients in the further establishment of the ePA is recommended. The selective opt-out option can contribute to acceptance. Knowledge of the ePA should be expanded, especially in the doctor-patient discussion, to enable an informed decision.
德国人对其健康数据非常敏感。电子健康记录（ePA）也引发了关于患者对数据主权和接受度需求的问题。从继续治疗患者的医生那里选择性隐瞒存储在ePA中的数据的可能性（选择退出）以及患者对ePA的事先了解可能会影响对数据主权的需求和对ePA的接受度。这项探索性研究的目的是调查这三种患者群体（“急性病患者”、“2型糖尿病患者”和“姑息治疗患者”）的这些影响，因为预计这些群体之间会存在差异。
2019年8月至10月，对上述群体的140名患者进行了定量调查。
在受访者中，76.0%支持选择性退出选项，并表示这会增加他们参与ePA的意愿。具体而言，81.1%的急性护理患者、80.6%的姑息治疗患者和65.6%的2型糖尿病患者发表了这一言论。组间差异不显著。对ePA的一般事先了解与对数据主权的更高需求相关——从未听说过ePA推出的人中有43.2%会偶尔向其他医生隐瞒自己的健康数据，相比之下，知道推出情况的人中有54.5%会这样做。
建议在进一步建立ePA时考虑患者的数据主权需求。选择性退出选项有助于提高接受度。应扩大对ePA的了解，尤其是在医患讨论中，以便做出明智的决定。
