International comparisons of 'big' health record data: application to cardiovascular diseases

心血管疾病(CVD)仍然是英国和世界范围内的主要死亡原因。随着医学在药物治疗和血管重建干预方面的进步，急诊医院治疗阶段缩短，心血管疾病的护理逐渐转向初级保健和社区服务。国际比较可以提供国家之间卫生系统在心血管疾病护理方面的表现的证据，从而促进向表现更好的系统学习。近期的重大挑战之一是利用初级和二级保健产生的国际结构化编码数据，以弥补将预防和治疗的科学证据应用于临床实践以改善人口健康的差距。尽管英国医疗数据的质量和全面性在世界上是独一无二的，但在国际研究背景下使用英国健康记录的例子非常少。一个核心瓶颈是了解哪些电子健康记录(EHR)来源可用于研究，以及它们的优势和劣势。国际研究界还没有共同努力使这些数据来源“可发现”、可共享或可访问。即使是最简单的问题(例如，哪些国家有可供研究的初级保健数据，其中哪些可以提供有关吸烟、血压和胆固醇的有意义的数据)也没有现成的答案。在MRC人口健康科学家联谊会的支持下，我将与Farr研究所密切合作，扩大在关联人口健康记录方面的国际合作，以调查心脏保健的重要研究问题，并解决卫生信息学领域的一些障碍。我将通过两个相互交织的目标来做到这一点：(I)临床研究：解决两个或更多国家在心血管疾病预防和进展方面的研究问题，这些问题只能使用电子健康记录数据来解决。(Ii)信息学方法：通过与FARR研究所的健康信息学专家密切合作，促进发现和记录与拥有不同保健系统的国家的心血管疾病研究有关的当代EHR数据源。OBJECTIVES(I)临床研究目标将首先比较遵守主要新指南建议可能在多大程度上与两个或更多国家大范围心血管疾病的减少有关。第二，比较两个或多个国家之间急性心肌梗死后短期和长期心力衰竭等心血管疾病的发生率。(2)信息学方法的目标将首先是建立一个跨学科的国际调查人员和资源网络，使心血管研究的电子健康记录数据来源可被发现和共享。第二，通过FARR研究所和卫生信息学网络，促进创建来自不同卫生保健环境的电子病历数据的国际可搜索元数据目录。潜在的应用和益处通过关注心血管疾病，预计研究结果将为有效的卫生系统和护理战略提供见解，以促进人口的健康和福祉。这项研究可以通过首先提供对各国预防和治疗护理的质量和结果后果的独特理解来促进知识。其次，与实质性的临床问题紧密交织在一起，我将能够通过使各国的复杂数据来源更容易被发现来为方法知识做出贡献，并提供使用这些数据来源扩大可复制研究所需的上下文和元数据信息。这项研究将有助于我们了解国际卫生信息学研究的研究合作、研究协调和信息治理。

Cardiovascular diseases (CVD) remain the leading cause of death in the UK and worldwide. With medical advancement in drug treatment and revascularization intervention, the acute hospital treatment phase shortens and the care for CVD has gradually shifted to primary care and community services. International comparisons can provide evidence of performance of health system in CVD care between countries, and thus facilitate learning from better performing systems. One of the near-term grand challenges is to exploit international structured coded data arising from primary and secondary care to address the gap of putting scientific evidence on prevention and treatment into clinical practice to improve population health. While the quality and comprehensiveness of UK healthcare data is exceptional in world, there are remarkably few instances of UK health records being used in international research contexts. A central bottleneck is knowing what electronic health records (EHR) sources are available for research, and their strengths and weakness. There has been no concerted effort to make such data sources 'discoverable,' shareable or accessible to the international research community. Even the most simple questions (e.g. which countries have primary care data available for research, and which of these can provide meaningful data on smoking, blood pressure and cholesterol) do not have readily accessible answers.With the support from the MRC Population Health Scientist Fellowship, in close collaboration with the Farr institute, I will expand international collaboration on linked population health records to investigate important research questions on cardiac care, and address some of the barriers in the field of health informatics. I will do this by addressing two interwoven aims: (i) Clinical research: to address research questions in the prevention and progression of cardiovascular diseases across two or more countries, which can only be tackled using electronic health record data. (ii) Informatics methods: To facilitate the discovery and documentation of contemporary EHR data sources relevant to cardiovascular disease research in countries with diverse healthcare systems by working in close collaboration with health informatics experts across the Farr Institute.OBJECTIVES (i) Clinical research objectives will be first to compare the extent to which adherence to major new guideline recommendations might be associated with reduction in a wide range of CVD in two or more countries. Second, to compare the incidence of CVD, such as heart failure in the short and long term after acute myocardial infarction between two or more countries. (ii) Informatics method objectives will be first to build an inter-disciplinary, international network of investigators and resources seeking to make EHR data sources discoverable and sharable for cardiovascular research. Second, to facilitate the creation of an international searchable meta-data catalogue of EHR data from different health care settings through the Farr Institute and the Health Informatics Network. Potential applications and benefitsBy focused on CVD, research results are expected to provide insights on effective health system and care strategies to contribute to the health and wellness of the population. The research may contribute to knowledge by firstly providing the unique understanding the quality and outcome consequences of preventive and treatment care across countries. Secondly, and tightly interwoven with the substantive clinical questions, I will be able to contribute to the knowledge of methods by making complex data sources across countries more 'discoverable', and provide the contextual and metadata information required in order to scale replicable research using these data sources. The research will contribute to our knowledge on research collaboration, study coordination and information governance for international health informatics studies.