Wieland-Jorna Y, Verheij R A, Francke A L, Coppen R, de Greeff S C, Elffers A, Oosterveld-Vlug M G
Nivel, Netherlands Institute for Health Services Research, Otterstraat 118, Utrecht, 3513 CR, The Netherlands.
Tranzo, School of Social Sciences and Behavioural Research, Tilburg University, Tilburg, 5037 DB, The Netherlands.
BMC Med Inform Decis Mak. 2024 Dec 27;24(1):408. doi: 10.1186/s12911-024-02818-3.
At the beginning of the COVID-19 pandemic in 2020, little was known about the spread of COVID-19 in Dutch nursing homes while older people were particularly at risk of severe symptoms. Therefore, attempts were made to develop a nationwide COVID-19 repository based on routinely recorded data in the electronic health records (EHRs) of nursing home residents. This study aims to describe the facilitators and barriers encountered during the development of the repository and the lessons learned regarding the reuse of EHR data for surveillance and research purposes.
Using inductive content analysis, we reviewed 325 documents written and saved during the development of the COVID-19 repository. This included meeting minutes, e-mails, notes made after phone calls with stakeholders, and documents developed to inform stakeholders. We also assessed the fitness for purpose of the data by evaluating the completeness, plausibility, conformity, and timeliness of the data.
Key facilitators found in this study were: 1) inter-organizational collaboration to create support; 2) early and close involvement of EHR software vendors; and 3) coordination and communication between partners. Key barriers that hampered the fitness of EHR data for surveillance were: 1) changes over time in national SARS-CoV-2 testing policy; 2) differences between EHR systems; 3) increased workload in nursing homes and lack of perceived urgency; 4) uncertainty regarding the legal requirements for extracting EHR data; 5) the short notice at which complete and understandable information about the repository had to be developed; and 6) lack of clarity about the differences between various COVID-19 monitors.
Despite the urgent need for information on the spread of SARS-CoV-2 among nursing home residents, setting up a repository based on EHR data proved challenging. The facilitators and barriers found in this study affected the extent to which the data could be used. We formulated nine lessons learned for developing future repositories based on EHR data for surveillance and research purposes. These lessons were in three main areas: legal framework, contextual circumstances, and quality of the data. Currently, these lessons are being applied in setting up a new registry in the nursing home sector.
在2020年新冠疫情初期，人们对新冠病毒在荷兰养老院中的传播情况知之甚少，而老年人尤其面临出现严重症状的风险。因此，人们试图基于养老院居民电子健康记录（EHR）中常规记录的数据，建立一个全国性的新冠病毒知识库。本研究旨在描述知识库开发过程中遇到的促进因素和障碍，以及在将EHR数据用于监测和研究目的方面所吸取的经验教训。
我们采用归纳式内容分析法，回顾了在新冠病毒知识库开发过程中撰写和保存的325份文件。这包括会议记录、电子邮件、与利益相关者电话沟通后所做的笔记，以及为向利益相关者通报情况而编制的文件。我们还通过评估数据的完整性、合理性、一致性和及时性，来评估数据是否适合使用目的。
本研究发现的关键促进因素包括：1）跨组织协作以获得支持；2）EHR软件供应商的早期密切参与；3）合作伙伴之间的协调与沟通。妨碍EHR数据用于监测的关键障碍包括：1）全国范围内新冠病毒检测政策随时间的变化；2）EHR系统之间的差异；3）养老院工作量增加且缺乏紧迫感；4）提取EHR数据的法律要求存在不确定性；5）必须在短时间内编制关于知识库的完整且易懂的信息；6）各种新冠病毒监测器之间的差异不明确。
尽管迫切需要了解新冠病毒在养老院居民中的传播信息，但基于EHR数据建立知识库被证明具有挑战性。本研究中发现的促进因素和障碍影响了数据的可用程度。我们为未来基于EHR数据建立用于监测和研究目的的知识库总结了九条经验教训。这些经验教训主要集中在三个领域：法律框架、背景情况和数据质量。目前，这些经验教训正在应用于养老院部门建立一个新的登记册。
