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首页> 外文期刊>International Journal of Population Data Science >Developing a checklist to inform data linkage study designs for health technology assessments: a case study linking the Cardiac Rhythm Management (CRM) register to the Secure Anonymised Information Linkage (SAIL) Databank
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Developing a checklist to inform data linkage study designs for health technology assessments: a case study linking the Cardiac Rhythm Management (CRM) register to the Secure Anonymised Information Linkage (SAIL) Databank

机译：制定清单以告知数据链接研究设计以进行卫生技术评估：将心脏节律管理（CRM）注册与安全匿名信息链接（SAIL）数据库链接的案例研究

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ABSTRACTObjectivesHealth services researchers are increasingly engaging with the emerging field of data science, but relatively few have the expertise to understand how innovative data linkage methodologies can, and cannot, be successfully applied in practice. There is little published guidance written specifically for this purpose. We aimed to develop study design criteria to help researchers in considering whether these methods are appropriate for their projects. A secondary objective was to test the criteria in a case study, and evaluate the application of the data linkage approach. ApproachClinical procedures requiring further research (according to the National Institute for Health and Care Excellence) were assessed against newly-developed CINDER criteria (Coverage; Identifiers; Numbers; Data; Existing records; Retrieval) to check the suitability of using data linkage methods. The CALON (Cardiac Ablation: Linking Outcomes for NICE) study was then established to evaluate outcomes of cardiac ablation procedures. Records from the UK’s Cardiac Rhythm Management (CRM) register were linked to routinely-recorded primary care, secondary care and mortality data in the Secure Anonymised Information Linkage (SAIL) Databank. Demographic profiles of patients identified from the register were compared with a group identified from SAIL. Outpatient attendances before and after ablation were compared using a Generalised Linear Mixed Model, assuming significance of p0.05. Kaplan-Meier analyses were used to estimate survival. Evaluation of methodological success concentrated on: adequately characterising patient populations from existing data; matching individuals between datasets; and data completeness/consistency. ResultsThe linked dataset contained 2220 anonymised records. Almost all (99.7%) patients from the register were matched using deterministic and probabilistic techniques. These patients were similar to individuals identified from hospital records with respect to sex and comorbidity score (p0.05); mean age differed by 1.6 years (95% CI 0.23-3.04; p=0.02). Patients accessed 26.7% fewer hospital outpatient appointments after ablation (95% CI 23.4 to 29.8; p0.001). There was no significant difference in the number of primary care events before and after ablation (95% CI -4.3 to 4.0; p=0.91). Survival was estimated at 91.0% after 5 years. Insufficient granularity of data precluded subgroup analyses. ConclusionsData linkage can be used to evaluate outcomes of interventions, although there are limitations associated with secondary use of observational data. The CALON study identified a post-ablation reduction in hospital attendances, suggesting an overall improvement in general health. We aim to publish the full CINDER checklist as a generic resource to facilitate assessment of the feasibility of using data linkage methods in other projects.
机译：摘要目标保健服务研究人员越来越多地与新兴的数据科学领域互动，但很少有人具备了解创新的数据链接方法如何能够成功实施或不能成功地实践的专业知识。几乎没有专门为此目的编写的已发布指南。我们旨在制定研究设计标准，以帮助研究人员考虑这些方法是否适合其项目。第二个目标是在案例研究中测试标准，并评估数据链接方法的应用。方法根据新制定的CINDER标准（覆盖率，标识符，数字，数据，现有记录，检索）对需要进一步研究的临床程序（根据美国国立卫生研究院的评估）进行评估，以检查使用数据链接方法的适用性。然后建立了CALON（心脏消融：NICE的相关结果）研究，以评估心脏消融程序的结果。英国心律管理（CRM）登记簿中的记录与安全匿名信息链接（SAIL）数据库中常规记录的初级保健，二级保健和死亡率数据相关联。从登记册中识别出的患者的人口统计学特征与从SAIL识别出的一组人群进行了比较。假设p <0.05，则使用广义线性混合模型比较消融前后的门诊人数。 Kaplan-Meier分析用于估计存活率。方法学成功与否的评估集中于：从现有数据中充分表征患者人群;在数据集之间匹配个人;以及数据完整性/一致性。结果链接的数据集包含2220个匿名记录。使用确定性和概率性技术对来自登记册的几乎所有患者（99.7％）进行匹配。这些患者与从医院记录中鉴定出的性别和合并症评分相似（p> 0.05）;平均年龄相差1.6岁（95％CI 0.23-3.04; p = 0.02）。消融后患者就诊的医院门诊次数减少了26.7％（95％CI 23.4至29.8; p <0.001）。消融前后的初级保健事件数量无显着差异（95％CI -4.3至4.0; p = 0.91）。 5年后存活率估计为91.0％。数据粒度不够，无法进行子组分析。结论数据链接可用于评估干预措施的效果，尽管与观察数据的二次使用有关。 CALON的研究确定了消融后住院人数的减少，表明整体健康状况得到了总体改善。我们旨在将完整的CINDER清单作为通用资源发布，以促进评估在其他项目中使用数据链接方法的可行性。

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