Lingner Heidrun, Aumann Ines, Wacker Margarethe, Kreuter Michael, Leidl Reiner, von der Schulenburg J-Matthias Graf, Welte Tobias
Zentrum Öffentliche Gesundheitspflege, Medizinische Hochschule Hannover, Hannover.
Deutsches Zentrum für Lungenforschung (DZL).
Gesundheitswesen. 2018 Nov;80(11):1026-1034. doi: 10.1055/s-0043-108544. Epub 2017 Jul 11.
Reliable current information is needed for daily patient care and the health system, but comprehensive data, especially from primary care, are scarce and/or hard to access. The BeoNet Register-Database (BNR) aims to depict quality of medical care in Germany using routine data and with no additional documentation or costs for GPs. Registry design, data structure and database use will be demonstrated using chronic obstructive lung disease (COPD) as an example. The BNR is moving through pilot- and roll-out phases. Participating practices provide standardized information about (1) master data (2) practice profile (3) infrastructure and documentation systems. The routinely documented data will be pseudonymized before transmission via standardized secure interfaces to the registry database. Practices can participate in studies in cooperation with BNR if informed consent is obtained from the patients. The registry data will be linked with questionnaires on health care utilization, quality of life and disease-specific parameters. Researchers and physicians can access quasi anonymized data in specific datasets extracted from the registry. Regular automatic data quality checks and feedback from GPs, patients and researchers enhance the quality of the registry. Performance and data analysis are continuously optimized. The data security concept has been approved and ethical approval is on hand. GPs, pediatricians and pneumologists from Hanover, Munich and Heidelberg participated in the pilot phase. The registry database currently holds 98497 patient IDs and related information. BNR contains more than the standard billing data collected by health insurers. The data are applicable to a wide range of health practices, health care and economics and disease development questions. Questionnaires have been generated, tested and are being distributed. First descriptive analyses of prevalence, age and gender have been performed. Quality and validity checks have been implemented. 2016 marks the roll-out phase of the BNR. Further recruitment of practices throughout Germany, data linkage with additional questionnaires, recruitment of patients for health care research projects, quality checks and data analysis of disease-specific costs and health-related quality of life in COPD are progressing with the overall aim of improving pulmonary healthcare strategies. The floor is now open for retro- and prospective cross-sectional and longitudinal studies.
日常患者护理和卫生系统需要可靠的最新信息，但全面的数据，尤其是来自初级保健的数据稀缺且/或难以获取。BeoNet注册数据库（BNR）旨在利用常规数据描绘德国的医疗质量，且无需全科医生额外记录或付费。将以慢性阻塞性肺疾病（COPD）为例展示注册设计、数据结构和数据库使用情况。BNR正处于试点和推广阶段。参与的医疗机构提供有关（1）主数据（2）机构概况（3）基础设施和文档系统的标准化信息。常规记录的数据在通过标准化安全接口传输到注册数据库之前将进行假名化处理。如果获得患者的知情同意，医疗机构可以与BNR合作参与研究。注册数据将与关于医疗保健利用、生活质量和疾病特定参数的问卷相链接。研究人员和医生可以访问从注册库中提取的特定数据集中的准匿名数据。定期自动进行数据质量检查以及来自全科医生、患者和研究人员的反馈提高了注册库的质量。性能和数据分析在不断优化。数据安全概念已获批准，伦理批准也已到手。来自汉诺威、慕尼黑和海德堡的全科医生、儿科医生和肺病专家参与了试点阶段。注册数据库目前拥有98497个患者ID及相关信息。BNR包含的内容不止健康保险公司收集的标准计费数据。这些数据适用于广泛的健康实践、医疗保健和经济学以及疾病发展问题。问卷已经生成、测试并正在分发。已经进行了患病率、年龄和性别的首次描述性分析。已经实施了质量和有效性检查。2016年是BNR的推广阶段。德国各地进一步招募医疗机构，将数据与其他问卷相链接，为医疗保健研究项目招募患者，对COPD的疾病特定成本和健康相关生活质量进行质量检查和数据分析，总体目标是改善肺部医疗保健策略。现在欢迎进行回顾性和前瞻性横断面及纵向研究。
