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首页> 外文OA文献 >Using nationwide ‘big data’ from linked electronic health records to help improve outcomes in cardiovascular diseases:33 studies using methods from epidemiology, informatics, economics and social science in the ClinicAl disease research using LInked Bespoke studies and Electronic health Records (CALIBER) programme
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Using nationwide ‘big data’ from linked electronic health records to help improve outcomes in cardiovascular diseases:33 studies using methods from epidemiology, informatics, economics and social science in the ClinicAl disease research using LInked Bespoke studies and Electronic health Records (CALIBER) programme

机译：利用链接的电子健康记录在全国范围内的“大数据”来帮助改善心血管疾病的预后：33项研究使用流行病学，信息学，经济学和社会科学方法进行临床疾病研究，并使用LInked定制研究和电子健康记录（CALIBER）计划

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BACKGROUND:Electronic health records (EHRs), when linked across primary and secondary care and curated for research use, have the potential to improve our understanding of care quality and outcomes.OBJECTIVE:To evaluate new opportunities arising from linked EHRs for improving quality of care and outcomes for patients at risk of or with coronary disease across the patient journey.DESIGN:Epidemiological cohort, health informatics, health economics and ethnographic approaches were used.SETTING:230 NHS hospitals and 226 general practices in England and Wales.PARTICIPANTS:Up to 2 million initially healthy adults, 100,000 people with stable coronary artery disease (SCAD) and up to 300,000 patients with acute coronary syndrome.MAIN OUTCOME MEASURES:Quality of care, fatal and non-fatal cardiovascular disease (CVD) events.DATA PLATFORM AND METHODS:We created a novel research platform [ClinicAl disease research using LInked Bespoke studies and Electronic health Records (CALIBER)] based on linkage of four major sources of EHR data in primary care and national registries. We carried out 33 complementary studies within the CALIBER framework. We developed a web-based clinical decision support system (CDSS) in hospital chest pain clinics. We established a novel consented prognostic clinical cohort of SCAD patients.RESULTS:CALIBER was successfully established as a valid research platform based on linked EHR data in nearly 2 million adults with  600 EHR phenotypes implemented on the web portal (see https://caliberresearch.org/portal). Despite national guidance, key opportunities for investigation and treatment were missed across the patient journey, resulting in a worse prognosis for patients in the UK compared with patients in health systems in other countries. Our novel, contemporary, high-resolution studies showed heterogeneous associations for CVD risk factors across CVDs. The CDSS did not alter the decision-making behaviour of clinicians in chest pain clinics. Prognostic models using real-world data validly discriminated risk of death and events, and were used in cost-effectiveness decision models.CONCLUSIONS:Emerging ‘big data’ opportunities arising from the linkage of records at different stages of a patient’s journey are vital to the generation of actionable insights into the diagnosis, risk stratification and cost-effective treatment of people at risk of, or with, CVD.FUTURE WORK:The vast majority of NHS data remain inaccessible to research and this hampers efforts to improve efficiency and quality of care and to drive innovation. We propose three priority directions for further research. First, there is an urgent need to ‘unlock’ more detailed data within hospitals for the scale of the UK’s 65 million population. Second, there is a need for scaled approaches to using EHRs to design and carry out trials, and interpret the implementation of trial results. Third, large-scale, disease agnostic genetic and biological collections linked to such EHRs are required in order to deliver precision medicine and to innovate discovery.STUDY REGISTRATION:CALIBER studies are registered as follows: study 2 – NCT01569139, study 4 – NCT02176174 and NCT01164371, study 5 – NCT01163513, studies 6 and 7 – NCT01804439, study 8 – NCT02285322, and studies 26–29 – NCT01162187. Optimising the Management of Angina is registered as Current Controlled Trials ISRCTN54381840.FUNDING:The National Institute for Health Research (NIHR) Programme Grants for Applied Research programme (RP-PG-0407-10314) (all 33 studies) and additional funding from the Wellcome Trust (study 1), Medical Research Council Partnership grant (study 3), Servier (study 16), NIHR Research Methods Fellowship funding (study 19) and NIHR Research for Patient Benefit (study 33).
机译：背景：电子健康记录（EHR）跨初级和二级医疗联系并策划用于研究时，有可能增进我们对医疗质量和结果的了解。目标：评估由链接的EHR带来的新机会，以改善医疗质量研究人员使用了流行病学队列，健康信息学，健康经济学和人种学方法。环境：英格兰和威尔士的230家NHS医院和226种常规做法。最初健康的成年人有200万，有稳定的冠状动脉疾病（SCAD）的有100,000人，有多达30万的急性冠状动脉综合征的患者。主要观察指标：护理，致命和非致命性心血管疾病（CVD）事件的质量。数据平台和方法：我们基于linkag创建了一个新的研究平台[使用LInked定制研究和电子健康记录（CALIBER）的临床疾病研究]初级保健和国家注册机构中EHR数据的四个主要来源中的e。我们在CALIBER框架内进行了33项补充研究。我们在医院胸痛诊所开发了基于Web的临床决策支持系统（CDSS）。我们建立了一个新的SCAD患者预后同意的临床队列。结果：基于链接的EHR数据，成功建立了一个有效的研究平台，该链接基于在Web门户网站上实施的近200万具有> 600 EHR表型的成年人中的EHR数据（请参阅https：// caliberresearch .org / portal）。尽管有国家指导，但在整个患者旅程中都错过了重要的调查和治疗机会，与其他国家的卫生系统患者相比，英国患者的预后更差。我们新颖，现代，高分辨率的研究表明，跨CVD的CVD危险因素之间存在异类关联。 CDSS并没有改变胸痛诊所中临床医生的决策行为。使用现实世界数据的预后模型可以有效地区分死亡和事件的风险，并用于成本效益决策模型。结论：在患者出行不同阶段，由于记录之间的联系而产生的“大数据”机会对产生可操作的见解，以对患有CVD或患有CVD的人进行诊断，风险分层和经济有效的治疗。未来工作：仍无法获得绝大多数NHS数据的研究，这阻碍了提高护理效率和质量的努力并推动创新。我们提出了三个优先研究方向。首先，迫切需要针对英国6千5百万人口的规模在医院内“解锁”更详细的数据。其次，需要使用电子病历设计和执行试验以及解释试验结果的实施的扩展方法。第三，需要与此类EHR相关的大规模，不可知病的基因和生物学集合，以便提供精确的药物和创新的发现。研究注册：口径研究注册如下：研究2 – NCT01569139，研究4 – NCT02176174和NCT01164371 ，研究5 – NCT01163513，研究6和7 – NCT01804439，研究8 – NCT02285322和研究26–29 – NCT01162187。优化心绞痛的管理已注册为ISRCTN54381840当前对照试验。资金：美国国立卫生研究院（NIHR）应用研究计划补助金（RP-PG-0407-10314）（共33项研究），以及来自Wellcome的其他资助信托（研究1），医学研究理事会合作伙伴资助（研究3），Servier（研究16），NIHR研究方法研究金（研究19）和NIHR研究患者利益（研究33）。

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