Bernstein Isaac A, Fernandez Karen S, Stein Joshua D, Pershing Suzann, Wang Sophia Y
Department of Ophthalmology, Byers Eye Institute, Stanford University, California.
Division of Ophthalmology and Visual Sciences, University of Michigan Kellogg Eye Center, Ann Arbor, MI, USA.
Taiwan J Ophthalmol. 2024 Sep 13;14(3):352-359. doi: 10.4103/tjo.TJO-D-24-00055. eCollection 2024 Jul-Sep.
The digitization of health records through electronic health records (EHRs) has transformed the landscape of ophthalmic research, particularly in the study of glaucoma. EHRs offer a wealth of structured and unstructured data, allowing for comprehensive analyses of patient characteristics, treatment histories, and outcomes. This review comprehensively discusses different EHR data sources, their strengths, limitations, and applicability towards glaucoma research. Institutional EHR repositories provide detailed multimodal clinical data, enabling in-depth investigations into conditions such as glaucoma and facilitating the development of artificial intelligence applications. Multicenter initiatives such as the Sight Outcomes Research Collaborative and the Intelligent Research In Sight registry offer larger, more diverse datasets, enhancing the generalizability of findings and supporting large-scale studies on glaucoma epidemiology, treatment outcomes, and practice patterns. The All of Us Research Program, with a special emphasis on diversity and inclusivity, presents a unique opportunity for glaucoma research by including underrepresented populations and offering comprehensive health data even beyond the EHR. Challenges persist, such as data access restrictions and standardization issues, but may be addressed through continued collaborative efforts between researchers, institutions, and regulatory bodies. Standardized data formats and improved data linkage methods, especially for ophthalmic imaging and testing, would further enhance the utility of EHR datasets for ophthalmic research, ultimately advancing our understanding and treatment of glaucoma and other ocular diseases on a global scale.
通过电子健康记录(EHR)实现的健康记录数字化改变了眼科研究的格局,尤其是在青光眼研究方面。电子健康记录提供了大量结构化和非结构化数据,有助于对患者特征、治疗史和治疗结果进行全面分析。本综述全面讨论了不同的电子健康记录数据源、它们的优势、局限性以及在青光眼研究中的适用性。机构电子健康记录库提供详细的多模态临床数据,有助于对青光眼等病症进行深入研究,并促进人工智能应用的开发。“视力结果研究协作组”和“智能视力研究注册库”等多中心项目提供了更大、更多样化的数据集,提高了研究结果的普遍性,并支持关于青光眼流行病学、治疗结果和实践模式的大规模研究。“我们所有人研究计划”特别强调多样性和包容性,通过纳入代表性不足的人群并提供甚至超出电子健康记录范围的全面健康数据,为青光眼研究提供了独特的机会。挑战依然存在,如数据访问限制和标准化问题,但研究人员、机构和监管机构之间持续的合作努力可能会解决这些问题。标准化数据格式和改进的数据链接方法,特别是对于眼科成像和检测,将进一步提高电子健康记录数据集在眼科研究中的效用,最终在全球范围内推进我们对青光眼和其他眼部疾病的理解与治疗。