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Innovative Solutions for State Medicaid Programs to Leverage Their Data, Build Their Analytic Capacity, and Create Evidence-Based Policy 为各州医疗补助计划提供创新解决方案,以利用其数据,建立其分析能力,并制定基于证据的政策
Pub Date : 2019-08-05 DOI: 10.5334/egems.311
Lauren Adams, Susan A Kennedy, L. Allen, Andrew J Barnes, Tom Bias, D. Crane, P. Lanier, Rachel G. Mauk, Shamis Mohamoud, Nathan Pauly, J. Talbert, C. Woodcock, K. Zivin, J. Donohue
As states have embraced additional flexibility to change coverage of and payment for Medicaid services, they have also faced heightened expectations for delivering high-value care. Efforts to meet these new expectations have increased the need for rigorous, evidence-based policy, but states may face challenges finding the resources, capacity, and expertise to meet this need. By describing state-university partnerships in more than 20 states, this commentary describes innovative solutions for states that want to leverage their own data, build their analytic capacity, and create evidence-based policy. From an integrated web-based system to improve long-term care to evaluating the impact of permanent supportive housing placements on Medicaid utilization and spending, these state partnerships provide significant support to their state Medicaid programs. In 2017, these partnerships came together to create a distributed research network that supports multi-state analyses. The Medicaid Outcomes Distributed Research Network (MODRN) uses a common data model to examine Medicaid data across states, thereby increasing the analytic rigor of policy evaluations in Medicaid, and contributing to the development of a fully functioning Medicaid innovation laboratory.
随着各州接受了额外的灵活性来改变医疗补助服务的覆盖范围和支付方式,他们也面临着提供高价值医疗服务的更高期望。为满足这些新期望而做出的努力增加了对严格的、基于证据的政策的需求,但各州可能面临寻找满足这一需求的资源、能力和专业知识的挑战。通过描述20多个州的州立大学合作伙伴关系,本评论为那些希望利用自己的数据、建立分析能力和制定循证政策的州描述了创新的解决方案。从改善长期护理的综合网络系统到评估永久性支持性住房安置对医疗补助利用和支出的影响,这些州的合作伙伴关系为其州医疗补助计划提供了重要支持。2017年,这些合作伙伴共同创建了一个支持多状态分析的分布式研究网络。医疗补助结果分布式研究网络(MODRN)使用一个通用的数据模型来检查各州的医疗补助数据,从而提高医疗补助政策评估的分析严密性,并有助于建立一个功能齐全的医疗补助创新实验室。
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引用次数: 12
Making Evidence Actionable: Interactive Dashboards, Bayes, and Health Care Innovation 使证据可操作:交互式仪表板、贝叶斯和医疗保健创新
Pub Date : 2019-08-05 DOI: 10.5334/egems.300
Anupa Bir, Nikki L. B. Freeman, Robert F. Chew, Kevin W. Smith, James H Derzon, T. Day
The results of many large-scale federal or multi-site evaluations are typically compiled into long reports which end up sitting on policymaker’s shelves. Moreover, the information policymakers need from these reports is often buried in the report, may not be remembered, understood, or readily accessible to the policymaker when it is needed. This is not a new challenge for evaluators, and advances in statistical methodology, while they have created greater opportunities for insight, may compound the challenge by creating multiple lenses through which evidence can be viewed. The descriptive evidence from traditional frequentist models, while familiar, are frequently misunderstood, while newer Bayesian methods provide evidence which is intuitive, but less familiar. These methods are complementary but presenting both increases the amount of evidence stakeholders and policymakers may find useful. In response to these challenges, we developed an interactive dashboard that synthesizes quantitative and qualitative data and allows users to access the evidence they want, when they want it, allowing each user a customized, and customizable view into the data collected for one large-scale federal evaluation. This offers the opportunity for policymakers to select the specifics that are most relevant to them at any moment, and also apply their own risk tolerance to the probabilities of various outcomes.
许多大规模的联邦或多地点评估的结果通常被汇编成长篇报告,最终被决策者搁置在书架上。此外,决策者从这些报告中需要的信息往往隐藏在报告中,可能不被记住、理解,或者在需要时不容易被决策者获取。这对评估人员来说并不是一个新挑战,统计方法的进步虽然创造了更多的洞察机会,但可能会创造多种视角来看待证据,从而使挑战复杂化。来自传统频率论模型的描述性证据虽然熟悉,但经常被误解,而较新的贝叶斯方法提供了直观的证据,但不太熟悉。这些方法是互补的,但同时提出这两种方法会增加利益攸关方和决策者可能认为有用的证据数量。为了应对这些挑战,我们开发了一个交互式仪表板,它综合了定量和定性数据,并允许用户在需要时访问他们想要的证据,允许每个用户对为大规模联邦评估收集的数据进行定制和可定制的视图。这为政策制定者提供了一个机会,可以在任何时候选择与他们最相关的具体细节,并将自己的风险承受能力应用于各种结果的可能性。
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引用次数: 1
Improving a Secondary Use Health Data Warehouse: Proposing a Multi-Level Data Quality Framework 改进二次使用健康数据仓库:提出一个多级数据质量框架
Pub Date : 2019-08-02 DOI: 10.5334/EGEMS.298
Sandra Henley-Smith, D. Boyle, K. Gray
Background: Data quality frameworks within information technology and recently within health care have evolved considerably since their inception. When assessing data quality for secondary uses, an area not yet addressed adequately in these frameworks is the context of the intended use of the data. Methods: After review of literature to identify relevant research, an existing data quality framework was refined and expanded to encompass the contextual requirements not present. Results: The result is a two-level framework to address the need to maintain the intrinsic value of the data, as well as the need to indicate whether the data will be able to provide the basis for answers in specific areas of interest or questions. Discussion: Data quality frameworks have always been one dimensional, requiring the implementers of these frameworks to fit the requirements of the data’s use around how the framework is designed to function. Our work has systematically addressed the shortcomings of existing frameworks, through the application of concepts synthesized from the literature to the naturalistic setting of data quality management in an actual health data warehouse. Conclusion: Secondary use of health data relies on contextualized data quality management. Our work is innovative in showing how to apply context around data quality characteristics and how to develop a second level data quality framework, so as to ensure that quality and context are maintained and addressed throughout the health data quality assessment process.
背景:信息技术和医疗保健领域的数据质量框架自成立以来已经有了长足的发展。在评估二次使用的数据质量时,这些框架中尚未充分处理的一个领域是数据的预期用途。方法:在对文献进行审查以确定相关研究后,对现有的数据质量框架进行了改进和扩展,以涵盖不存在的上下文要求。结果:结果是一个两级框架,以解决保持数据内在价值的需要,以及表明数据是否能够为感兴趣的特定领域或问题的答案提供基础的需要。讨论:数据质量框架一直是一维的,要求这些框架的实现者围绕框架的功能设计来满足数据使用的要求。我们的工作通过将文献中综合的概念应用于实际健康数据仓库中数据质量管理的自然设置,系统地解决了现有框架的缺点。结论:健康数据的二次使用依赖于情境化的数据质量管理。我们的工作具有创新性,展示了如何围绕数据质量特征应用上下文,以及如何开发二级数据质量框架,以确保在整个健康数据质量评估过程中保持和处理质量和上下文。
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引用次数: 12
Colonoscopy Indication Algorithm Performance Across Diverse Health Care Systems in the PROSPR Consortium. 在PROSPR联盟中,结肠镜检查指征算法在不同医疗保健系统中的表现
Pub Date : 2019-08-02 DOI: 10.5334/egems.296
Andrea N Burnett-Hartman, Aruna Kamineni, Douglas A Corley, Amit G Singal, Ethan A Halm, Carolyn M Rutter, Jessica Chubak, Jeffrey K Lee, Chyke A Doubeni, John M Inadomi, V Paul Doria-Rose, Yingye Zheng

Background: Despite the importance of characterizing colonoscopy indication for quality monitoring and cancer screening program evaluation, there is no standard approach to documenting colonoscopy indication in medical records.

Methods: We applied two algorithms in three health care systems to assign colonoscopy indication to persons 50-89 years old who received a colonoscopy during 2010-2013. Both algorithms used standard procedure, diagnostic, and laboratory codes. One algorithm, the KPNC algorithm, used a hierarchical approach to classify exam indication into: diagnostic, surveillance, or screening; whereas the other, the SEARCH algorithm, used a logistic regression-based algorithm to provide the probability that colonoscopy was performed for screening. Gold standard assessment of indication was from medical records abstraction.

Results: There were 1,796 colonoscopy exams included in analyses; age and racial/ethnic distributions of participants differed across health care systems. The KPNC algorithm's sensitivities and specificities for screening indication ranged from 0.78-0.82 and 0.78-0.91, respectively; sensitivities and specificities for diagnostic indication ranged from 0.78-0.89 and 0.74-0.82, respectively. The KPNC algorithm had poor sensitivities (ranging from 0.11-0.67) and high specificities for surveillance exams. The Area Under the Curve (AUC) of the SEARCH algorithm for screening indication ranged from 0.76-0.84 across health care systems. For screening indication, the KPNC algorithm obtained higher specificities than the SEARCH algorithm at the same sensitivity.

Conclusion: Despite standardized implementation of these indication algorithms across three health care systems, the capture of colonoscopy indication data was imperfect. Thus, we recommend that standard, systematic documentation of colonoscopy indication should be added to medical records to ensure efficient and accurate data capture.

背景:尽管结肠镜检查指征特征对质量监测和癌症筛查项目评估具有重要意义,但在医疗记录中记录结肠镜检查指征尚无标准方法。方法:我们在三个医疗保健系统中应用两种算法对2010-2013年期间接受结肠镜检查的50-89岁患者进行结肠镜检查指征分配。这两种算法都使用标准程序、诊断和实验室代码。一种算法,KPNC算法,使用分层方法将检查指征分为:诊断、监测或筛查;而另一种是SEARCH算法,使用基于逻辑回归的算法来提供进行结肠镜检查进行筛查的概率。金标准评价指征来自病历摘录。结果:1796例结肠镜检查纳入分析;参与者的年龄和种族/民族分布在不同的医疗保健系统中有所不同。KPNC算法筛选适应症的敏感性和特异性分别为0.78 ~ 0.82和0.78 ~ 0.91;诊断指征的敏感性和特异性分别为0.78-0.89和0.74-0.82。KPNC算法的敏感性较差(范围为0.11-0.67),对监测检查的特异性较高。SEARCH算法用于筛查适应症的曲线下面积(AUC)在卫生保健系统中的范围为0.76-0.84。在筛选适应症方面,KPNC算法在相同灵敏度下比SEARCH算法具有更高的特异性。结论:尽管在三个卫生保健系统中标准化实施了这些指征算法,但结肠镜检查指征数据的采集尚不完善。因此,我们建议在医疗记录中增加结肠镜检查指征的标准、系统的记录,以确保有效和准确的数据采集。
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引用次数: 0
Understanding U.S. Health Systems: Using Mixed Methods to Unpack Organizational Complexity 了解美国卫生系统:用混合方法破解组织复杂性
Pub Date : 2019-08-02 DOI: 10.5334/EGEMS.302
M. Ridgely, E. Duffy, Laura J. Wolf, M. Vaiana, D. Scanlon, Christine Buttorff, Brigitt Leitzell, S. Ahluwalia, L. Hilton, D. Agniel, A. Haviland, C. Damberg
Introduction: As hospitals and physician organizations increasingly vertically integrate, there is an important opportunity to use health systems to improve performance. Prior research has largely relied on secondary data sources, but little is known about how health systems are organized “on the ground” and what mechanisms are available to influence physician practice at the front line of care. Methods: We collected in-depth information on eight health systems through key informant interviews, descriptive surveys, and document review. Qualitative data were systematically coded. We conducted analyses to identify organizational structures and mechanisms through which health systems influence practice. Results: As expected, we found that health systems vary on multiple dimensions related to organizational structure (e.g., size, complexity) which reflects history, market and mission. With regard to levers of influence, we observed within-system variation both in mechanisms (e.g., employment of physicians, system-wide EHR, standardization of service lines) and level of influence. Concepts such as “core” versus “peripheral” were more salient than “ownership” versus “contract.” Discussion: Data from secondary sources can help identify and map health systems, but they do not adequately describe them or the variation that exists within and across systems. To examine the degree to which health systems can influence performance, more detailed and nuanced information on health system characteristics is necessary. Conclusion: The mixed-methods data accrual approach used in this study provides granular qualitative data that enables researchers to describe multi-layered health systems, grasp the context in which they operate, and identify the key drivers of performance.
引言:随着医院和医生组织日益垂直整合,利用卫生系统来提高绩效是一个重要的机会。先前的研究在很大程度上依赖于二级数据来源,但对卫生系统是如何“实地”组织的,以及有什么机制可以影响医疗一线的医生实践,却知之甚少。方法:我们通过关键信息提供者访谈、描述性调查和文献综述,收集了八个卫生系统的深入信息。对定性数据进行了系统编码。我们进行了分析,以确定卫生系统影响实践的组织结构和机制。结果:正如预期的那样,我们发现卫生系统在与反映历史、市场和使命的组织结构(如规模、复杂性)相关的多个维度上存在差异。关于影响杠杆,我们观察到系统内机制(例如,医生的雇用、全系统的EHR、服务线的标准化)和影响水平的变化。“核心”与“外围”等概念比“所有权”与“合同”更为突出。讨论:来自二级来源的数据可以帮助识别和绘制卫生系统,但它们不能充分描述它们或系统内部和系统之间存在的变化。为了研究卫生系统对绩效的影响程度,有必要提供关于卫生系统特征的更详细、更细致的信息。结论:本研究中使用的混合方法-数据累积方法提供了细粒度的定性数据,使研究人员能够描述多层次的卫生系统,掌握其运作的背景,并确定绩效的关键驱动因素。
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引用次数: 17
Clinical Workflow and Substance Use Screening, Brief Intervention, and Referral to Treatment Data in the Electronic Health Records: A National Drug Abuse Treatment Clinical Trials Network Study 临床工作流程和药物使用筛查、短暂干预和电子健康记录中治疗数据的转诊:一项全国药物滥用治疗临床试验网络研究
Pub Date : 2019-08-01 DOI: 10.5334/egems.293
Li-Tzy Wu, Elizabeth H. Payne, Kimberly Roseman, Carla Kingsbury, Ashley Case, C. Nelson, R. Lindblad
Introduction: The use of electronic health records (EHR) data in research to inform recruitment and outcomes is considered a critical element for pragmatic studies. However, there is a lack of research on the availability of substance use disorder (SUD) treatment data in the EHR to inform research. Methods: This study recruited providers who used an EHR for patient care and whose facilities were affiliated with the National Institute on Drug Abuse’s National Drug Abuse Treatment Clinical Trials Network (NIDA CTN). Data about providers’ use of an EHR and other methods to support and document clinical tasks for Substance use screening, Brief Intervention, and Referral to Treatment (SBIRT) were collected. Results: Participants (n = 26) were from facilities across the country (South 46.2%, West 23.1%, Midwest 19.2 percent, Northeast 11.5 percent), representing 26 different health systems/facilities at various settings: primary care (30.8 percent), ambulatory other/specialty (26.9 percent), mixed setting (11.5 percent), hospital outpatient (11.5 percent), emergency department (7.7 percent), inpatient (3.8 percent), and other (7.7 percent). Validated tools were rarely used for substance use screen and SUD assessment. Structured and unstructured EHR fields were commonly used to document SBIRT. The following tasks had high proportions of using unstructured EHR fields: substance use screen, treatment exploration, brief intervention, referral, and follow-up. Conclusion: This study is the first of its kind to investigate the documentation of SBIRT in the EHR outside of unique settings (e.g., Veterans Health Administration). While results are descriptive, they emphasize the importance of developing EHR features to collect structured data for SBIRT to improve health care quality evaluation and SUD research.
引言:在研究中使用电子健康记录(EHR)数据来为招募和结果提供信息被认为是务实研究的关键因素。然而,缺乏关于EHR中物质使用障碍(SUD)治疗数据的可用性的研究,为研究提供信息。方法:本研究招募了使用EHR进行患者护理的提供者,其设施隶属于国家药物滥用研究所的国家药物滥用治疗临床试验网络(NIDA CTN)。收集了提供者使用EHR和其他方法来支持和记录药物使用筛查、短暂干预和转诊治疗(SBIRT)的临床任务的数据。结果:参与者(n=26)来自全国各地的医疗机构(南部46.2%,西部23.1%,中西部19.2%,东北部11.5%),代表了不同环境下的26个不同的卫生系统/机构:初级保健(30.8%)、门诊其他/专科(26.9%)、混合环境(11.5%)、医院门诊(11.5%,住院患者(3.8%)和其他患者(7.7%)。经验证的工具很少用于物质使用筛查和SUD评估。结构化和非结构化EHR字段通常用于记录SBIRT。以下任务使用非结构化EHR领域的比例很高:物质使用筛查、治疗探索、短暂干预、转诊和随访。结论:这项研究是第一项在独特环境(如退伍军人健康管理局)之外调查EHR中SBIRT的文献。虽然结果是描述性的,但它们强调了开发EHR特征的重要性,以收集SBIRT的结构化数据,从而改进医疗质量评估和SUD研究。
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引用次数: 5
Design and Refinement of a Data Quality Assessment Workflow for a Large Pediatric Research Network 大型儿科研究网络数据质量评估工作流程的设计与优化
Pub Date : 2019-08-01 DOI: 10.5334/EGEMS.294
Ritu Khare, Levon H. Utidjian, H. Razzaghi, Victoria Soucek, Evanette K. Burrows, D. Eckrich, Richard Hoyt, Harris Weinstein, Matthew Miller, David Soler, Joshua Tucker, L. C. Bailey
Background: Clinical data research networks (CDRNs) aggregate electronic health record data from multiple hospitals to enable large-scale research. A critical operation toward building a CDRN is conducting continual evaluations to optimize data quality. The key challenges include determining the assessment coverage on big datasets, handling data variability over time, and facilitating communication with data teams. This study presents the evolution of a systematic workflow for data quality assessment in CDRNs. Implementation: Using a specific CDRN as use case, the workflow was iteratively developed and packaged into a toolkit. The resultant toolkit comprises 685 data quality checks to identify any data quality issues, procedures to reconciliate with a history of known issues, and a contemporary GitHub-based reporting mechanism for organized tracking. Results: During the first two years of network development, the toolkit assisted in discovering over 800 data characteristics and resolving over 1400 programming errors. Longitudinal analysis indicated that the variability in time to resolution (15day mean, 24day IQR) is due to the underlying cause of the issue, perceived importance of the domain, and the complexity of assessment. Conclusions: In the absence of a formalized data quality framework, CDRNs continue to face challenges in data management and query fulfillment. The proposed data quality toolkit was empirically validated on a particular network, and is publicly available for other networks. While the toolkit is user-friendly and effective, the usage statistics indicated that the data quality process is very time-intensive and sufficient resources should be dedicated for investigating problems and optimizing data for research.
背景:临床数据研究网络(cdrn)汇集了来自多家医院的电子健康记录数据,以实现大规模研究。构建CDRN的一个关键操作是进行持续评估以优化数据质量。关键的挑战包括确定大数据集的评估覆盖范围,处理随时间变化的数据,以及促进与数据团队的沟通。本研究提出了cdrn数据质量评估系统工作流程的演变。实现:使用特定的CDRN作为用例,迭代地开发工作流并将其打包到工具包中。由此产生的工具包包括685个数据质量检查,用于识别任何数据质量问题,用于与已知问题历史进行协调的程序,以及用于有组织跟踪的基于github的现代报告机制。结果:在网络开发的前两年,该工具包帮助发现了800多个数据特征并解决了1400多个编程错误。纵向分析表明,解决时间的可变性(平均15天,24天IQR)是由于问题的潜在原因、领域的感知重要性和评估的复杂性。结论:在缺乏形式化数据质量框架的情况下,cdrn在数据管理和查询实现方面继续面临挑战。提出的数据质量工具包在一个特定的网络上进行了经验验证,并且对其他网络公开可用。虽然该工具包是用户友好且有效的,但使用统计数据表明,数据质量过程非常耗时,应该专门用于调查问题和优化数据以供研究。
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引用次数: 17
Using Electronic Medical Records to Identify Enhanced Recovery After Surgery Cases 使用电子医疗记录识别手术后恢复增强的病例
Pub Date : 2019-07-26 DOI: 10.5334/egems.304
Nikki L. B. Freeman, K. McGinigle, P. Leese
Context: Enhanced recovery after surgery (ERAS) aims to improve surgical outcomes by integrating evidence-based practices across preoperative, intraoperative, and postoperative care. Data in electronic medical records (EMRs) provide insight on how ERAS is implemented and its impact on surgical outcomes. Because ERAS is a multimodal pathway provided by multiple physicians and health care providers over time, identifying ERAS cases in EMRs is not a trivial task. To better understand how EMRs can be used to study ERAS, we describe our experience with using current methodologies and the development and rationale of a new method for retrospectively identifying ERAS cases in EMRs. Case Description: Using EMR data from surgical departments at the University of North Carolina at Chapel Hill, we first identified ERAS cases using a protocol-based method, using basic information including the date of ERAS implementation, surgical procedure and date, and primary surgeon. We further examined two operational flags in the EMRs, a nursing order and a case request for OR order. Wide variation between the methods compelled us to consult with ERAS surgical staff and explore the EMRs to develop a more refined method for identifying ERAS cases. Method: We developed a two-step method, with the first step based on the protocol definition and the second step based on an ERAS-specific medication definition. To test our method, we randomly sampled 150 general, gynecological, and urologic surgeries performed between January 1, 2016 and March 30, 2017. Surgical cases were classified as ERAS or not using the protocol definition, nursing order, case request for OR order, and our two-step method. To assess the accuracy of each method, two independent reviewers assessed the charts to determine whether cases were ERAS. Findings: Of the 150 charts reviewed, 74 were ERAS cases. The protocol only method and nursing order flag performed similarly, correctly identifying 74 percent and 73 percent of true ERAS cases, respectively. The case request for OR order flag performed less well, correctly identifying only 44 percent of the true ERAS cases. Our two-step method performed well, correctly identifying 98 percent of true ERAS cases. Conclusion: ERAS pathways are complex, making study of them from EMRs difficult. Current strategies for doing so are relatively easy to implement, but unreliable. We have developed a reproducible and observable ERAS computational phenotype that identifies ERAS cases reliably. This is a step forward in using the richness of EMR data to study ERAS implementation, efficacy, and how they can contribute to surgical care improvement.
背景:增强术后恢复(ERAS)旨在通过整合术前、术中和术后护理的循证实践来改善手术结果。电子医疗记录(EMR)中的数据可以深入了解ERAS的实施方式及其对手术结果的影响。由于ERAS是由多个医生和医疗保健提供者随着时间的推移提供的多模式途径,因此在电子病历中识别ERAS病例并非易事。为了更好地了解电子病历如何用于研究电子逆向拍卖,我们描述了我们使用当前方法的经验,以及回顾性识别电子病历中电子逆向拍卖病例的新方法的开发和原理。病例描述:使用北卡罗来纳大学教堂山分校外科的电子病历数据,我们首先使用基于方案的方法,使用包括ERAS实施日期、手术程序和日期以及主要外科医生在内的基本信息,确定了ERAS病例。我们进一步检查了电子病历中的两个操作标志,一个护理订单和一个OR订单的病例请求。方法之间的巨大差异迫使我们咨询ERAS手术人员,并探索电子病历,以开发一种更精细的方法来识别ERAS病例。方法:我们开发了一种两步方法,第一步基于方案定义,第二步基于ERAS特异性药物定义。为了测试我们的方法,我们随机抽取了2016年1月1日至2017年3月30日期间进行的150例普通外科、妇科和泌尿外科手术。使用方案定义、护理顺序、病例请求or顺序和我们的两步方法将手术病例分类为ERAS或未分类。为了评估每种方法的准确性,两名独立评审员对图表进行了评估,以确定病例是否为ERAS。调查结果:在审查的150张图表中,74张是ERAS病例。仅采用方案的方法和护理命令标志的效果相似,分别正确识别了74%和73%的真实ERAS病例。OR订单标志的案例请求表现不佳,仅正确识别了44%的真实ERAS案例。我们的两步方法表现良好,正确识别了98%的真实ERAS病例。结论:ERAS通路复杂,难以从电子病历中进行研究。目前这样做的策略相对容易实施,但不可靠。我们已经开发了一种可重复和可观察的ERAS计算表型,可以可靠地识别ERAS病例。这是利用丰富的电子病历数据来研究ERAS的实施、疗效以及它们如何有助于改善外科护理的一个进步。
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引用次数: 2
DataGauge: A Practical Process for Systematically Designing and Implementing Quality Assessments of Repurposed Clinical Data. DataGauge:系统设计和实施重新利用的临床数据质量评估的实用过程
Pub Date : 2019-07-25 DOI: 10.5334/egems.286
Jose-Franck Diaz-Garelli, Elmer V Bernstam, MinJae Lee, Kevin O Hwang, Mohammad H Rahbar, Todd R Johnson

The well-known hazards of repurposing data make Data Quality (DQ) assessment a vital step towards ensuring valid results regardless of analytical methods. However, there is no systematic process to implement DQ assessments for secondary uses of clinical data. This paper presents DataGauge, a systematic process for designing and implementing DQ assessments to evaluate repurposed data for a specific secondary use. DataGauge is composed of five steps: (1) Define information needs, (2) Develop a formal Data Needs Model (DNM), (3) Use the DNM and DQ theory to develop goal-specific DQ assessment requirements, (4) Extract DNM-specified data, and (5) Evaluate according to DQ requirements. DataGauge's main contribution is integrating general DQ theory and DQ assessment methods into a systematic process. This process supports the integration and practical implementation of existing Electronic Health Record-specific DQ assessment guidelines. DataGauge also provides an initial theory-based guidance framework that ties the DNM to DQ testing methods for each DQ dimension to aid the design of DQ assessments. This framework can be augmented with existing DQ guidelines to enable systematic assessment. DataGauge sets the stage for future systematic DQ assessment research by defining an assessment process, capable of adapting to a broad range of clinical datasets and secondary uses. Defining DataGauge sets the stage for new research directions such as DQ theory integration, DQ requirements portability research, DQ assessment tool development and DQ assessment tool usability.

众所周知,重新调整数据用途的危害使数据质量(DQ)评估成为确保有效结果的重要一步,无论采用何种分析方法。然而,对于临床数据的二次使用,没有系统的过程来实施DQ评估。本文介绍了DataGauge,这是一个设计和实施DQ评估的系统过程,用于评估用于特定二次用途的重新调整用途的数据。DataGauge由五个步骤组成:(1)定义信息需求,(2)开发正式的数据需求模型(DNM),(3)使用DNM和DQ理论开发特定目标的DQ评估需求,(4)提取DNM指定的数据,以及(5)根据DQ需求进行评估。DataGauge的主要贡献是将一般的DQ理论和DQ评估方法集成到一个系统的过程中。该流程支持现有电子健康记录特定DQ评估指南的集成和实际实施。DataGauge还提供了一个基于理论的初始指导框架,将DNM与每个DQ维度的DQ测试方法联系起来,以帮助设计DQ评估。该框架可以通过现有的DQ指南进行扩充,以实现系统评估。DataGauge通过定义评估过程,为未来的系统DQ评估研究奠定了基础,能够适应广泛的临床数据集和二次使用。定义DataGauge为新的研究方向奠定了基础,如DQ理论集成、DQ需求可移植性研究、DQ评估工具开发和DQ评估工具包可用性。
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引用次数: 0
Willingness to Participate in Health Information Networks with Diverse Data Use: Evaluating Public Perspectives. 参与数据使用多样化的卫生信息网络的意愿:评估公众观点
Pub Date : 2019-07-25 DOI: 10.5334/egems.288
Jodyn Platt, Minakshi Raj, Ayşe G Büyüktür, M Grace Trinidad, Olufunmilayo Olopade, Mark S Ackerman, Sharon Kardia

Introduction: Health information generated by health care encounters, research enterprises, and public health is increasingly interoperable and shareable across uses and users. This paper examines the US public's willingness to be a part of multi-user health information networks and identifies factors associated with that willingness.

Methods: Using a probability-based sample (n = 890), we examined the univariable and multivariable relationships between willingness to participate in health information networks and demographic factors, trust, altruism, beliefs about the public's ethical obligation to participate in research, privacy, medical deception, and policy and governance using linear regression modeling.

Results: Willingness to be a part of a multi-user network that includes health care providers, mental health, social services, research, or quality improvement is low (26 percent-7.4 percent, depending on the user). Using stepwise regression, we identified a model that explained 42.6 percent of the variability in willingness to participate and included nine statistically significant factors associated with the outcome: Trust in the health system, confidence in policy, the belief that people have an obligation to participate in research, the belief that health researchers are accountable for conducting ethical research, the desire to give permission, education, concerns about insurance, privacy, and preference for notification.

Discussion: Our results suggest willingness to be a part of multi-user data networks is low, but that attention to governance may increase willingness. Building trust to enable acceptance of multi-use data networks will require a commitment to aligning data access practices with the expectations of the people whose data is being used.

简介:由卫生保健机构、研究企业和公共卫生产生的卫生信息越来越多地跨用途和用户进行互操作和共享。本文考察了美国公众成为多用户健康信息网络一部分的意愿,并确定了与这种意愿相关的因素。方法:使用基于概率的样本(n = 890),我们使用线性回归模型检验了参与卫生信息网络意愿与人口统计学因素、信任、利他主义、公众参与研究的道德义务信念、隐私、医疗欺骗以及政策和治理之间的单变量和多变量关系。结果:成为包括医疗保健提供者、心理健康、社会服务、研究或质量改进在内的多用户网络的一部分的意愿很低(26% - 7.4%,取决于用户)。使用逐步回归,我们确定了一个模型,可以解释42.6%的参与意愿变异性,并包括与结果相关的九个统计显着因素:对卫生系统的信任、对政策的信心、对人们有义务参与研究的信念、对卫生研究人员有责任开展合乎道德的研究的信念、给予许可的愿望、教育、对保险、隐私的关切以及对通知的偏好。讨论:我们的结果表明,成为多用户数据网络一部分的意愿很低,但对治理的关注可能会增加意愿。建立信任以接受多用途数据网络将需要承诺使数据访问实践与使用数据的人的期望保持一致。
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