health record

健康记录
  • 文章类型: Journal Article
    背景:近年来,使用数字健康设备的人数有所增加。患者的使用率较高表明初级保健提供者(PCP)可能能够利用这些工具来有效地指导和监测患者的身体活动(PA)。尽管有证据表明远程患者监测(RPM)可能会增强肥胖干预措施,很少有初级保健实践实施使用商业数字健康工具来促进健康或减少疾病并发症的计划。
    目的:这项形成性研究旨在评估人们的看法,需要,以及实施电子健康记录(EHR)集成RPM计划的挑战,该计划使用可穿戴设备在大型城市初级保健实践中促进患者PA,为将来的干预做准备。
    方法:我们的团队确定了将可穿戴数据上传到EHR(EpicSystems)的现有工作流程,其中包括直接Fitbit(Google)集成,允许将患者PA数据上传到EHR。我们确定了描述PCP临床工作流程的图形工作辅助工具。然后,我们在大型城市初级保健诊所对PCP(n=10)和肥胖患者(n=8)进行了半结构化访谈,了解他们对该计划的偏好和障碍。我们向以前开发的图片辅助工具展示了(1)提供者完成订单集的说明,设定计步目标,并接收反馈和(2)患者设置他们的可穿戴设备并将它们连接到他们的患者门户账户。我们在访谈期间和之后使用快速定性分析来为患者和提供者编码和开发关键主题,以实现我们的研究目标。
    结果:总计,从提供者访谈中确定了3个主题:(1)提供者对PA处方的知识集中在一般指南上,而对如何为患者量身定制指导的知识有限,(2)提供者对接收PA数据持开放态度,但担心额外的患者数据负担过重,和(3)提供者担心患者能够公平地获得和参与数字健康干预措施。此外,从患者访谈中还确定了3个主题:(1)患者从提供者和其他资源获得了关于PA的有限或非特定指导,(2)患者希望与医疗保健团队分享运动指标,并定期接受量身定制的PA指导,(3)患者需要书面资源来支持建立RPM计划,并根据需要获得实时帮助。
    结论:基于EHR的RPM计划和相关工作流程的实施对于PCP和患者是可接受的,但需要关注提供者对增加患者数据负担的担忧以及患者对接受定制PA指导的担忧。我们正在进行的工作将试行RPM计划,并在初级保健环境中评估可行性和可接受性。
    BACKGROUND: The number of individuals using digital health devices has grown in recent years. A higher rate of use in patients suggests that primary care providers (PCPs) may be able to leverage these tools to effectively guide and monitor physical activity (PA) for their patients. Despite evidence that remote patient monitoring (RPM) may enhance obesity interventions, few primary care practices have implemented programs that use commercial digital health tools to promote health or reduce complications of the disease.
    OBJECTIVE: This formative study aimed to assess the perceptions, needs, and challenges of implementation of an electronic health record (EHR)-integrated RPM program using wearable devices to promote patient PA at a large urban primary care practice to prepare for future intervention.
    METHODS: Our team identified existing workflows to upload wearable data to the EHR (Epic Systems), which included direct Fitbit (Google) integration that allowed for patient PA data to be uploaded to the EHR. We identified pictorial job aids describing the clinical workflow to PCPs. We then performed semistructured interviews with PCPs (n=10) and patients with obesity (n=8) at a large urban primary care clinic regarding their preferences and barriers to the program. We presented previously developed pictorial aids with instructions for (1) providers to complete an order set, set step-count goals, and receive feedback and (2) patients to set up their wearable devices and connect them to their patient portal account. We used rapid qualitative analysis during and after the interviews to code and develop key themes for both patients and providers that addressed our research objective.
    RESULTS: In total, 3 themes were identified from provider interviews: (1) providers\' knowledge of PA prescription is focused on general guidelines with limited knowledge on how to tailor guidance to patients, (2) providers were open to receiving PA data but were worried about being overburdened by additional patient data, and (3) providers were concerned about patients being able to equitably access and participate in digital health interventions. In addition, 3 themes were also identified from patient interviews: (1) patients received limited or nonspecific guidance regarding PA from providers and other resources, (2) patients want to share exercise metrics with the health care team and receive tailored PA guidance at regular intervals, and (3) patients need written resources to support setting up an RPM program with access to live assistance on an as-needed basis.
    CONCLUSIONS: Implementation of an EHR-based RPM program and associated workflow is acceptable to PCPs and patients but will require attention to provider concerns of added burdensome patient data and patient concerns of receiving tailored PA guidance. Our ongoing work will pilot the RPM program and evaluate feasibility and acceptability within a primary care setting.
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  • 文章类型: Journal Article
    背景:医学知识图谱提供了可解释的决策支持,帮助临床医生提供及时的诊断和治疗建议。然而,在现实世界的临床实践中,患者前往不同的医院寻求各种医疗服务,导致不同医院的患者数据分散。由于数据安全问题,数据碎片化限制了知识图的应用,因为单医院数据无法为生成精确的决策支持和全面的解释提供完整的证据。研究知识图谱系统多中心集成的新方法,信息敏感的医疗环境,使用零散的患者记录进行决策支持,同时保持数据隐私和安全性。
    目的:本研究旨在提出一种面向电子健康记录(EHR)的知识图谱系统,用于与多中心零散的患者医疗数据进行协作推理,同时保护数据隐私。
    方法:该研究引入了EHR知识图谱框架和新的协作推理过程,用于利用多中心碎片信息。该系统部署在每个医院中,并使用统一的语义结构和观察医疗结果伙伴关系(OMOP)词汇来标准化本地EHR数据集。该系统将本地EHR数据转换为语义格式并执行语义推理以生成中间推理结果。生成的中间发现使用hypernym概念来分离原始医疗数据。中间发现和哈希加密的患者身份通过区块链网络进行同步。多中心中间发现进行了最终推理和临床决策支持,而无需收集原始EHR数据。
    结果:通过一项应用研究对该系统进行了评估,该研究涉及利用多中心片段化的EHR数据来提醒非肾脏病临床医生注意被忽略的慢性肾脏病(CKD)患者。该研究涵盖了3家医院的非肾病科1185名患者。患者至少访问了两家医院。其中,通过使用多中心EHR数据进行协作推理,确定124例患者符合CKD诊断标准,而单独来自个别医院的数据不能促进这些患者CKD的识别.临床医生的评估表明,78/91(86%)患者为CKD阳性。
    结论:所提出的系统能够有效地利用多中心片段化的EHR数据进行临床应用。应用研究显示了该系统具有迅速和全面的决策支持的临床优势。
    BACKGROUND: The medical knowledge graph provides explainable decision support, helping clinicians with prompt diagnosis and treatment suggestions. However, in real-world clinical practice, patients visit different hospitals seeking various medical services, resulting in fragmented patient data across hospitals. With data security issues, data fragmentation limits the application of knowledge graphs because single-hospital data cannot provide complete evidence for generating precise decision support and comprehensive explanations. It is important to study new methods for knowledge graph systems to integrate into multicenter, information-sensitive medical environments, using fragmented patient records for decision support while maintaining data privacy and security.
    OBJECTIVE: This study aims to propose an electronic health record (EHR)-oriented knowledge graph system for collaborative reasoning with multicenter fragmented patient medical data, all the while preserving data privacy.
    METHODS: The study introduced an EHR knowledge graph framework and a novel collaborative reasoning process for utilizing multicenter fragmented information. The system was deployed in each hospital and used a unified semantic structure and Observational Medical Outcomes Partnership (OMOP) vocabulary to standardize the local EHR data set. The system transforms local EHR data into semantic formats and performs semantic reasoning to generate intermediate reasoning findings. The generated intermediate findings used hypernym concepts to isolate original medical data. The intermediate findings and hash-encrypted patient identities were synchronized through a blockchain network. The multicenter intermediate findings were collaborated for final reasoning and clinical decision support without gathering original EHR data.
    RESULTS: The system underwent evaluation through an application study involving the utilization of multicenter fragmented EHR data to alert non-nephrology clinicians about overlooked patients with chronic kidney disease (CKD). The study covered 1185 patients in nonnephrology departments from 3 hospitals. The patients visited at least two of the hospitals. Of these, 124 patients were identified as meeting CKD diagnosis criteria through collaborative reasoning using multicenter EHR data, whereas the data from individual hospitals alone could not facilitate the identification of CKD in these patients. The assessment by clinicians indicated that 78/91 (86%) patients were CKD positive.
    CONCLUSIONS: The proposed system was able to effectively utilize multicenter fragmented EHR data for clinical application. The application study showed the clinical benefits of the system with prompt and comprehensive decision support.
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  • 文章类型: Journal Article
    背景:人群病毒载量(VL),艾滋病毒传播潜力的最全面的衡量标准,由于缺乏对所有艾滋病毒感染者的完整抽样,因此无法直接测量。
    目标:给定HIV诊所的电子健康记录(EHR),这个群体的一个有偏见的样本,可能被用来试图推算这一措施。
    方法:我们模拟了一个由10,000名个体组成的群体,并根据几何平均值为4449拷贝/mL的监测数据进行了VL校准。我们从(A)源种群中采样了3个假设的EHR,(B)那些被诊断的人,和(C)那些被保留在照管中的人。我们的分析使用抽样权重,然后进行贝叶斯调整,从每个EHR估算出人口VL。然后使用来自特拉华州HIV诊所的EHR数据来测试这些方法。
    结果:加权后,估计值以相应更宽的95%间隔向人群值的方向移动,如下:诊所A:4364(95%间隔1963-11,132)拷贝/mL;诊所B:4420(95%间隔1913-10,199)拷贝/mL;诊所C:242(95%间隔113-563)拷贝/mL.贝叶斯调整的加权进一步改进了估计。
    结论:这些发现表明,方法学调整对于从单个诊所的EHR估计群体VL是无效的,而没有资源密集型的信息先验的阐明。
    BACKGROUND: Population viral load (VL), the most comprehensive measure of the HIV transmission potential, cannot be directly measured due to lack of complete sampling of all people with HIV.
    OBJECTIVE: A given HIV clinic\'s electronic health record (EHR), a biased sample of this population, may be used to attempt to impute this measure.
    METHODS: We simulated a population of 10,000 individuals with VL calibrated to surveillance data with a geometric mean of 4449 copies/mL. We sampled 3 hypothetical EHRs from (A) the source population, (B) those diagnosed, and (C) those retained in care. Our analysis imputed population VL from each EHR using sampling weights followed by Bayesian adjustment. These methods were then tested using EHR data from an HIV clinic in Delaware.
    RESULTS: Following weighting, the estimates moved in the direction of the population value with correspondingly wider 95% intervals as follows: clinic A: 4364 (95% interval 1963-11,132) copies/mL; clinic B: 4420 (95% interval 1913-10,199) copies/mL; and clinic C: 242 (95% interval 113-563) copies/mL. Bayesian-adjusted weighting further improved the estimate.
    CONCLUSIONS: These findings suggest that methodological adjustments are ineffective for estimating population VL from a single clinic\'s EHR without the resource-intensive elucidation of an informative prior.
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  • 文章类型: Clinical Trial Protocol
    背景:研究生活方式干预对癌症幸存者体重减轻的临床试验已被证明是安全的,可行,而且有效。然而,需要可扩展的减肥计划来支持其广泛实施。ASPIRE试验旨在评估真实世界,以生活方式为基础,整个马里兰州癌症幸存者的减肥计划。
    目的:本方案文件的目的是描述非随机实际试验的设计,研究招募,和参与者的基线特征。
    方法:参与者年龄≥18岁,居住在马里兰州,BMI≥25kg/m2,报告诊断为恶性实体瘤,完成治愈性治疗,并且没有正在进行或计划中的癌症治疗。最小化登记标准以增加普适性。主要招聘来源是约翰霍普金斯卫生系统电子健康记录(EHR)。参与者选择了3个远程提供的减肥计划中的1个:自我指导,应用程序支持,或教练支持的计划。
    结果:参与者在马里兰州的所有5个地理区域招募。使用EHR的有针对性的邀请占340名参与者中的287名(84.4%)。在通过EHR邀请的5644名患者中,5.1%(287/5644)登记。参与者的平均年龄为60.7(SD10.8)岁,74.7%(254/340)为女性,55.9%(190/340)被确定为非西班牙裔黑人,58.5%(199/340)拥有学士学位,平均BMI为34.1kg/m2(SD5.9kg/m2)。最常见的癌症类型是乳腺癌(168/340,49.4%),前列腺(72/340,21.2%),甲状腺(39/340,8.5%)。自我指导的减肥计划(n=91)包括25名参与者,他们同意通过研究量表提供体重;应用程序支持的计划(n=142)包括108名同意提供体重测量的个人;教练支持的减肥计划包括107名参与者。我们预计最终分析将在2024年秋季进行。
    结论:使用基于EHR的招聘工作,这项研究采用了务实的方法,让癌症幸存者参与远程实施的减肥计划,并将其纳入研究.
    背景:ClinicalTrials.govNCT04534309;https://clinicaltrials.gov/study/NCT04534309。
    DERR1-10.2196/54126。
    BACKGROUND: Clinical trials examining lifestyle interventions for weight loss in cancer survivors have been demonstrated to be safe, feasible, and effective. However, scalable weight loss programs are needed to support their widespread implementation. The ASPIRE trial was designed to evaluate real-world, lifestyle-based, weight loss programs for cancer survivors throughout Maryland.
    OBJECTIVE: The objectives of this protocol paper are to describe the design of a nonrandomized pragmatic trial, study recruitment, and baseline characteristics of participants.
    METHODS: Participants were aged ≥18 years, residing in Maryland, with a BMI ≥25 kg/m2, who reported a diagnosis of a malignant solid tumor, completed curative treatment, and had no ongoing or planned cancer treatment. Enrollment criteria were minimized to increase generalizability. The primary recruitment source was the Johns Hopkins Health System electronic health records (EHRs). Participants selected 1 of 3 remotely delivered weight loss programs: self-directed, app-supported, or coach-supported program.
    RESULTS: Participants were recruited across all 5 geographic regions of Maryland. Targeted invitations using EHRs accounted for 287 (84.4%) of the 340 participants enrolled. Of the 5644 patients invited through EHR, 5.1% (287/5644) enrolled. Participants had a mean age of 60.7 (SD 10.8) years, 74.7% (254/340) were female, 55.9% (190/340) identified as non-Hispanic Black, 58.5% (199/340) had a bachelor\'s degree, and the average BMI was 34.1 kg/m2 (SD 5.9 kg/m2). The most common types of cancers were breast (168/340, 49.4%), prostate (72/340, 21.2%), and thyroid (39/340, 8.5%). The self-directed weight loss program (n=91) included 25 participants who agreed to provide weights through a study scale; the app-supported program (n=142) included 108 individuals who agreed to provide their weight measurements; and the coach-supported weight loss program included 107 participants. We anticipate final analysis will take place in the fall of 2024.
    CONCLUSIONS: Using EHR-based recruitment efforts, this study took a pragmatic approach to reach and enroll cancer survivors into remotely delivered weight loss programs.
    BACKGROUND: ClinicalTrials.gov NCT04534309; https://clinicaltrials.gov/study/NCT04534309.
    UNASSIGNED: DERR1-10.2196/54126.
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  • 文章类型: Journal Article
    在许多国家,医疗保健专业人员有法律义务与患者共享电子健康记录中的信息。然而,人们对与青少年分享精神卫生保健笔记提出了担忧,和卫生保健专业人员呼吁建议,以指导这一做法。
    目的是在科学论文的作者之间就为卫生保健专业人员提供的建议达成共识,并调查儿童和青少年专业精神卫生保健诊所的工作人员是否同意这些建议。
    与科学论文的作者进行了Delphi研究,以就建议达成共识。提出建议的过程包括三个步骤。首先,通过PubMed检索筛选了符合入选标准的科学论文.第二,对纳入论文的结果进行编码,并在迭代过程中转化为建议.第三,纳入论文的作者被要求提供反馈,并认为他们同意两轮建议的每一个建议.在Delphi过程之后,我们在儿童和青少年心理保健专科诊所的工作人员中进行了一项横断面研究,以评估他们是否同意达成共识的建议.
    在邀请的84位作者中,27回答就精神保健中与青少年数字分享笔记相关领域的17项建议达成共识。这些建议考虑了如何引入数字访问笔记,写笔记,并支持医疗保健专业人员,以及何时保留笔记。在儿童和青少年专业精神保健诊所的41名工作人员中,60%或更多的人同意17条建议。关于青少年应该获得数字访问笔记的年龄以及与父母数字共享笔记的时间,尚未达成共识。
    共有17项建议涉及卫生保健专业人员的关键方面,与青少年在精神卫生保健中的数字笔记共享达成了共识。卫生保健专业人员可以使用这些建议来指导他们与青少年分享精神卫生保健笔记的做法。然而,遵循这些建议的效果和经验应在临床实践中进行测试。
    UNASSIGNED: In many countries, health care professionals are legally obliged to share information from electronic health records with patients. However, concerns have been raised regarding the sharing of notes with adolescents in mental health care, and health care professionals have called for recommendations to guide this practice.
    UNASSIGNED: The aim was to reach a consensus among authors of scientific papers on recommendations for health care professionals\' digital sharing of notes with adolescents in mental health care and to investigate whether staff at child and adolescent specialist mental health care clinics agreed with the recommendations.
    UNASSIGNED: A Delphi study was conducted with authors of scientific papers to reach a consensus on recommendations. The process of making the recommendations involved three steps. First, scientific papers meeting the eligibility criteria were identified through a PubMed search where the references were screened. Second, the results from the included papers were coded and transformed into recommendations in an iterative process. Third, the authors of the included papers were asked to provide feedback and consider their agreement with each of the suggested recommendations in two rounds. After the Delphi process, a cross-sectional study was conducted among staff at specialist child and adolescent mental health care clinics to assess whether they agreed with the recommendations that reached a consensus.
    UNASSIGNED: Of the 84 invited authors, 27 responded. A consensus was reached on 17 recommendations on areas related to digital sharing of notes with adolescents in mental health care. The recommendations considered how to introduce digital access to notes, write notes, and support health care professionals, and when to withhold notes. Of the 41 staff members at child and adolescent specialist mental health care clinics, 60% or more agreed with the 17 recommendations. No consensus was reached regarding the age at which adolescents should receive digital access to their notes and the timing of digitally sharing notes with parents.
    UNASSIGNED: A total of 17 recommendations related to key aspects of health care professionals\' digital sharing of notes with adolescents in mental health care achieved consensus. Health care professionals can use these recommendations to guide their practice of sharing notes with adolescents in mental health care. However, the effects and experiences of following these recommendations should be tested in clinical practice.
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  • 文章类型: Journal Article
    背景:国家卫生服务(NHS)谈话疗法计划根据“阶梯式护理”在英格兰治疗患有常见心理健康问题的人,“首先提供较低强度的干预措施,临床上适当的。有限的资源和达到服务标准的压力意味着计划提供商正在探索所有机会来评估和改善患者通过其服务的流动。现有的研究已经发现了不同的临床表现和跨站点的逐步护理实施,并且已经确定了服务提供和患者结果之间的关联。流程挖掘提供了一种数据驱动的方法来分析和评估医疗保健流程和系统,能够比较服务交付的假定模式及其在实践中的实际执行情况。尚未研究将过程挖掘应用于NHSTalkingTherapies数据以分析护理途径的价值和实用性。
    目标:更好地了解服务交付系统将支持改进和计划中的计划扩展。因此,本研究旨在证明使用电子健康记录将过程挖掘应用于NHSTalkingTherapies护理路径的价值和实用性。
    方法:常规收集关于活动和患者结果的各种数据是TalkingTherapies计划的基础。在我们的研究中,通过绘制护理路径图并确定共同路径路径,使用过程挖掘对来自2个站点的匿名患者转诊记录进行分析,以可视化护理路径过程.
    结果:过程挖掘能够直接从常规收集的数据中识别和可视化患者流。这些可视化说明了等待期和确定的潜在瓶颈,例如在1号站点等待更高强度的认知行为治疗(CBT)。此外,我们观察到,与开始治疗的患者相比,从治疗等待名单中出院的患者等待时间似乎更长.工艺开采允许分析处理途径,表明患者通常经历的治疗途径涉及低强度或高强度干预。在最常见的路线中,>5倍的患者经历了直接获得高强度治疗而不是阶梯式护理。总的来说,所有患者中有3.32%(站点1:1507/45,401)和4.19%(站点2:527/12,590)经历了逐步护理。
    结论:我们的研究结果证明了如何将过程挖掘应用于TalkingTherapies护理路径以评估路径性能,探索绩效问题之间的关系,突出系统性问题,例如分级护理在分级护理系统中相对不常见。将流程挖掘能力整合到常规监控中,将使NHSTalkingTherapies服务利益相关者能够从流程角度探索此类问题。这些见解将通过确定服务改进的领域来为服务提供价值,为容量规划决策提供证据,并促进更好的质量分析,以了解卫生系统如何影响患者的预后。
    BACKGROUND: The National Health Service (NHS) Talking Therapies program treats people with common mental health problems in England according to \"stepped care,\" in which lower-intensity interventions are offered in the first instance, where clinically appropriate. Limited resources and pressure to achieve service standards mean that program providers are exploring all opportunities to evaluate and improve the flow of patients through their service. Existing research has found variation in clinical performance and stepped care implementation across sites and has identified associations between service delivery and patient outcomes. Process mining offers a data-driven approach to analyzing and evaluating health care processes and systems, enabling comparison of presumed models of service delivery and their actual implementation in practice. The value and utility of applying process mining to NHS Talking Therapies data for the analysis of care pathways have not been studied.
    OBJECTIVE: A better understanding of systems of service delivery will support improvements and planned program expansion. Therefore, this study aims to demonstrate the value and utility of applying process mining to NHS Talking Therapies care pathways using electronic health records.
    METHODS: Routine collection of a wide variety of data regarding activity and patient outcomes underpins the Talking Therapies program. In our study, anonymized individual patient referral records from two sites over a 2-year period were analyzed using process mining to visualize the care pathway process by mapping the care pathway and identifying common pathway routes.
    RESULTS: Process mining enabled the identification and visualization of patient flows directly from routinely collected data. These visualizations illustrated waiting periods and identified potential bottlenecks, such as the wait for higher-intensity cognitive behavioral therapy (CBT) at site 1. Furthermore, we observed that patients discharged from treatment waiting lists appeared to experience longer wait durations than those who started treatment. Process mining allowed analysis of treatment pathways, showing that patients commonly experienced treatment routes that involved either low- or high-intensity interventions alone. Of the most common routes, >5 times as many patients experienced direct access to high-intensity treatment rather than stepped care. Overall, 3.32% (site 1: 1507/45,401) and 4.19% (site 2: 527/12,590) of all patients experienced stepped care.
    CONCLUSIONS: Our findings demonstrate how process mining can be applied to Talking Therapies care pathways to evaluate pathway performance, explore relationships among performance issues, and highlight systemic issues, such as stepped care being relatively uncommon within a stepped care system. Integration of process mining capability into routine monitoring will enable NHS Talking Therapies service stakeholders to explore such issues from a process perspective. These insights will provide value to services by identifying areas for service improvement, providing evidence for capacity planning decisions, and facilitating better quality analysis into how health systems can affect patient outcomes.
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  • 文章类型: Journal Article
    在医学研究项目和数据共享计划中,假名化已成为安全管理患者和研究参与者身份的最佳实践。这种方法的优点是不需要直接识别数据来支持各种研究过程,同时仍然允许高级处理活动。例如数据链接。通常,假名化和相关功能捆绑在称为可信第三方(TTP)的特定技术和组织单元中。然而,假名化会大大增加数据管理和研究工作流程的复杂性,需要足够的工具支持。TTP的常见任务包括支持患者和样本身份的安全注册和假名化以及管理同意。
    尽管存在挑战,关于在大型大学医院实施TTP的成功架构和功能工具的报道很少。本文的目的是通过描述在Charité-UniversityätsmedizinBerlin建立的TTP的一部分开发和部署的软件架构和工具集来填补这一研究空白。
    TTP的基础架构旨在提供模块化结构,同时保持较低的维护要求。基本功能是通过免费的MOSAIC工具实现的。然而,支持通用研究过程需要实施跨越不同基本服务的工作流程,比如病人登记,随后是化名,并通过收集同意书结束。为了实现这一点,开发了集成层,以提供统一的代表性状态传输(REST)应用程序编程接口(API),作为更复杂工作流的基础。基于这个API,还实现了统一的图形用户界面,提供TTP支持的信息对象和工作流的集成视图。该API是使用Java和SpringBoot实现的,而图形用户界面是在PHP和Laravel中实现的。两种服务都使用共享的Keycloak实例作为角色和权限的统一管理系统。
    到2022年底,自2019年12月推出以来,TTP已经支持了10多个研究项目。在这些项目中,存储了3000多个身份,产生了超过30,000个化名,并提交了1500多份同意书。总的来说,超过150人经常使用软件平台。通过实现集成层和统一的用户界面,以及全面的角色和权限管理,操作TTP的工作量可以大大减少,作为支持的研究项目的人员可以独立使用许多功能。
    描述了架构和组件,我们创造了一个用户友好和合规的环境来支持研究项目。我们相信,对我们TTP的设计和实施的见解可以帮助其他机构高效地建立相应的结构。
    UNASSIGNED: Pseudonymization has become a best practice to securely manage the identities of patients and study participants in medical research projects and data sharing initiatives. This method offers the advantage of not requiring the direct identification of data to support various research processes while still allowing for advanced processing activities, such as data linkage. Often, pseudonymization and related functionalities are bundled in specific technical and organization units known as trusted third parties (TTPs). However, pseudonymization can significantly increase the complexity of data management and research workflows, necessitating adequate tool support. Common tasks of TTPs include supporting the secure registration and pseudonymization of patient and sample identities as well as managing consent.
    UNASSIGNED: Despite the challenges involved, little has been published about successful architectures and functional tools for implementing TTPs in large university hospitals. The aim of this paper is to fill this research gap by describing the software architecture and tool set developed and deployed as part of a TTP established at Charité - Universitätsmedizin Berlin.
    UNASSIGNED: The infrastructure for the TTP was designed to provide a modular structure while keeping maintenance requirements low. Basic functionalities were realized with the free MOSAIC tools. However, supporting common study processes requires implementing workflows that span different basic services, such as patient registration, followed by pseudonym generation and concluded by consent collection. To achieve this, an integration layer was developed to provide a unified Representational state transfer (REST) application programming interface (API) as a basis for more complex workflows. Based on this API, a unified graphical user interface was also implemented, providing an integrated view of information objects and workflows supported by the TTP. The API was implemented using Java and Spring Boot, while the graphical user interface was implemented in PHP and Laravel. Both services use a shared Keycloak instance as a unified management system for roles and rights.
    UNASSIGNED: By the end of 2022, the TTP has already supported more than 10 research projects since its launch in December 2019. Within these projects, more than 3000 identities were stored, more than 30,000 pseudonyms were generated, and more than 1500 consent forms were submitted. In total, more than 150 people regularly work with the software platform. By implementing the integration layer and the unified user interface, together with comprehensive roles and rights management, the effort for operating the TTP could be significantly reduced, as personnel of the supported research projects can use many functionalities independently.
    UNASSIGNED: With the architecture and components described, we created a user-friendly and compliant environment for supporting research projects. We believe that the insights into the design and implementation of our TTP can help other institutions to efficiently and effectively set up corresponding structures.
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  • 文章类型: Journal Article
    背景:COVID-19大流行增加了几十年的证据,表明公共卫生机构经常超出其能力范围。社区卫生工作者(CHW)可以成为解决卫生不平等问题的公共卫生资源的重要扩展。但是记录CHW工作的系统通常是分散的,容易出现不必要的冗余,错误,效率低下。
    目的:我们寻求开发一种更有效的数据收集系统,以记录CHW进行的基于社区的广泛工作。
    方法:促进公平的社区组织(COPE)项目是一项旨在解决堪萨斯州健康差异的举措,在某种程度上,通过部署CHW。我们的团队反复设计和完善了CHW的新型数据收集系统的功能。使用CHW进行了几个月的试点测试,以确保该功能支持其日常使用。在数据库实现之后,程序被设置为维持CHW的反馈收集,社区合作伙伴,和具有类似系统的组织不断修改数据库以满足用户的需求。每月进行一次持续质量改进过程,以评估CHW绩效;在团队和个人层面交换有关持续质量改进结果和改进机会的反馈。Further,向所有33个COPECHWs和主管分发了15项反馈调查,以评估数据库功能的可行性,可访问性,和总体满意度。
    结果:启动时,该数据库在20个县有60个活跃用户。记录的客户互动始于需求评估(亚利桑那州自给自足矩阵和PRAPARE的修改版本[响应和评估患者资产的协议,风险,和经验]),并继续纵向跟踪实现目标的进展。基于用户特定的自动警报的仪表板显示需要跟进和即将发生的事件的客户端。该数据库包含超过5079个客户端的超过55,000个记录的相遇。已记录了来自2500多个社区组织的可用资源。调查数据表明,84%(27/32)的受访者认为数据库的整体导航非常容易。大多数受访者表示他们对数据库总体非常满意(14/32,44%)或满意(15/32,48%)。开放式响应表明了数据库的功能,社区组织的文档和同意书的视觉确认和数据存储在健康保险可移植性和责任法案兼容的记录系统,提高客户参与度,注册过程,和资源的识别。
    结论:我们的数据库超越了传统的电子病历,为不断变化的需求提供了灵活性。COPE数据库提供了有关CHW成就的实际数据,从而提高数据收集的一致性,以加强监测和评估。该数据库可以用作基于社区的文档系统的模型,并适用于其他社区环境。
    BACKGROUND: The COVID-19 pandemic added to the decades of evidence that public health institutions are routinely stretched beyond their capacity. Community health workers (CHWs) can be a crucial extension of public health resources to address health inequities, but systems to document CHW efforts are often fragmented and prone to unneeded redundancy, errors, and inefficiency.
    OBJECTIVE: We sought to develop a more efficient data collection system for recording the wide range of community-based efforts performed by CHWs.
    METHODS: The Communities Organizing to Promote Equity (COPE) project is an initiative to address health disparities across Kansas, in part, through the deployment of CHWs. Our team iteratively designed and refined the features of a novel data collection system for CHWs. Pilot tests with CHWs occurred over several months to ensure that the functionality supported their daily use. Following implementation of the database, procedures were set to sustain the collection of feedback from CHWs, community partners, and organizations with similar systems to continually modify the database to meet the needs of users. A continuous quality improvement process was conducted monthly to evaluate CHW performance; feedback was exchanged at team and individual levels regarding the continuous quality improvement results and opportunities for improvement. Further, a 15-item feedback survey was distributed to all 33 COPE CHWs and supervisors for assessing the feasibility of database features, accessibility, and overall satisfaction.
    RESULTS: At launch, the database had 60 active users in 20 counties. Documented client interactions begin with needs assessments (modified versions of the Arizona Self-sufficiency Matrix and PRAPARE [Protocol for Responding to and Assessing Patient Assets, Risks, and Experiences]) and continue with the longitudinal tracking of progress toward goals. A user-specific automated alerts-based dashboard displays clients needing follow-up and upcoming events. The database contains over 55,000 documented encounters across more than 5079 clients. Available resources from over 2500 community organizations have been documented. Survey data indicated that 84% (27/32) of the respondents considered the overall navigation of the database as very easy. The majority of the respondents indicated they were overall very satisfied (14/32, 44%) or satisfied (15/32, 48%) with the database. Open-ended responses indicated the database features, documentation of community organizations and visual confirmation of consent form and data storage on a Health Insurance Portability and Accountability Act-compliant record system, improved client engagement, enrollment processes, and identification of resources.
    CONCLUSIONS: Our database extends beyond conventional electronic medical records and provides flexibility for ever-changing needs. The COPE database provides real-world data on CHW accomplishments, thereby improving the uniformity of data collection to enhance monitoring and evaluation. This database can serve as a model for community-based documentation systems and be adapted for use in other community settings.
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  • 文章类型: Journal Article
    嵌入在电子病历(EMR)中的临床决策支持系统(CDS),也被称为电子健康记录,有可能改善临床指南的采用。阿尔伯塔大学炎症性肠病(IBD)小组为可能正在经历疾病发作的IBD患者开发了CDSS,并在2个连续时间段内将其部署在临床信息系统中。
    本研究旨在评估IBDCDSS对医疗保健提供者依从性的影响(即,医师和护士)到机构商定的临床管理方案。
    2周期中断时间序列(ITS)设计,比较CDSS实施前后门诊就诊期间对临床耀斑管理方案的依从性,被使用。每次中断都是通过用户培训和使用说明的备忘录启动的。一组7名医生,1名执业护士,邀请4名护士使用CDSS。总的来说,从临床信息系统数据库中提取了31,726次耀斑遭遇,其中9217人被手动筛选纳入。ITS分析中的每个数据点对应于1个月的个体患者遭遇,每个周期总共18个月的数据(中断前9个,中断后9个)。该研究是根据健康信息学评估报告(STARE-HI)指南设计的。
    手动筛选后,确认了623次耀斑遭遇,并指定用于ITS分析。CDSS在623次遭遇中的198次中被激活,最常见于主要就诊原因是疑似IBD发作的病例。在实施期1中,前后分析表明,临床评分的记录从3.5%增加到24.1%(P<.001),在ITS分析中具有统计学上显著的水平变化(P=0.03)。在实施期2中,前后分析显示急性疾病耀斑实验室测试的顺序进一步增加(47.6%至65.8%;P<.001),包括生物标志物粪便钙卫蛋白(27.9%至37.3%;P=0.03)和粪便培养测试(54.6%至66.9%;P=.005);后者是用于区分耀斑与传染病的测试。在实施期2中,ITS分析没有显著的斜率或水平变化。总体提供商采用率中等,约为25%,与医生(在6.7%的耀斑中使用)相比,护士提供者的采用率更高(在30.5%的耀斑中使用)。
    这是第一批调查IBDCDSS实施情况的研究之一,采用领先的EMR软件(EpicSystems)设计,提供改善常规护理的初步证据。确定了未来研究的几个领域,特别是CDS对结果的影响,以及如何设计对医生更实用的CDSS。IBD的CDSS也应进行更大规模的评估;区域和国家集中式EMR系统可以促进这一点。
    UNASSIGNED: Clinical decision support systems (CDSSs) embedded in electronic medical records (EMRs), also called electronic health records, have the potential to improve the adoption of clinical guidelines. The University of Alberta Inflammatory Bowel Disease (IBD) Group developed a CDSS for patients with IBD who might be experiencing disease flare and deployed it within a clinical information system in 2 continuous time periods.
    UNASSIGNED: This study aims to evaluate the impact of the IBD CDSS on the adherence of health care providers (ie, physicians and nurses) to institutionally agreed clinical management protocols.
    UNASSIGNED: A 2-period interrupted time series (ITS) design, comparing adherence to a clinical flare management protocol during outpatient visits before and after the CDSS implementation, was used. Each interruption was initiated with user training and a memo with instructions for use. A group of 7 physicians, 1 nurse practitioner, and 4 nurses were invited to use the CDSS. In total, 31,726 flare encounters were extracted from the clinical information system database, and 9217 of them were manually screened for inclusion. Each data point in the ITS analysis corresponded to 1 month of individual patient encounters, with a total of 18 months of data (9 before and 9 after interruption) for each period. The study was designed in accordance with the Statement on Reporting of Evaluation Studies in Health Informatics (STARE-HI) guidelines for health informatics evaluations.
    UNASSIGNED: Following manual screening, 623 flare encounters were confirmed and designated for ITS analysis. The CDSS was activated in 198 of 623 encounters, most commonly in cases where the primary visit reason was a suspected IBD flare. In Implementation Period 1, before-and-after analysis demonstrates an increase in documentation of clinical scores from 3.5% to 24.1% (P<.001), with a statistically significant level change in ITS analysis (P=.03). In Implementation Period 2, the before-and-after analysis showed further increases in the ordering of acute disease flare lab tests (47.6% to 65.8%; P<.001), including the biomarker fecal calprotectin (27.9% to 37.3%; P=.03) and stool culture testing (54.6% to 66.9%; P=.005); the latter is a test used to distinguish a flare from an infectious disease. There were no significant slope or level changes in ITS analyses in Implementation Period 2. The overall provider adoption rate was moderate at approximately 25%, with greater adoption by nurse providers (used in 30.5% of flare encounters) compared to physicians (used in 6.7% of flare encounters).
    UNASSIGNED: This is one of the first studies to investigate the implementation of a CDSS for IBD, designed with a leading EMR software (Epic Systems), providing initial evidence of an improvement over routine care. Several areas for future research were identified, notably the effect of CDSSs on outcomes and how to design a CDSS with greater utility for physicians. CDSSs for IBD should also be evaluated on a larger scale; this can be facilitated by regional and national centralized EMR systems.
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  • 文章类型: Journal Article
    背景:基于Web的患者门户是可以支持青少年管理健康和发展自主性的工具。然而,在为青少年及其父母制定门户访问策略时,信息学管理员必须导航相互竞争的兴趣。
    目的:我们旨在评估信息学管理者对青少年医疗保健中基于网络的医疗保健门户访问政策制定指导原则的观点。
    方法:我们采访了美国医院的信息学管理人员,这些医院的儿科专用床位≥50张。我们对制定和实施青少年门户访问政策的指导原则进行了主题分析。
    结果:我们采访了代表63家儿科医院的65位信息学领导者,58个卫生保健系统,29个州,和14379张儿科病床。与会者描述了与三个总体主题有关的9项指导原则:(1)平衡机密性和其他护理需求,(2)平衡简单性和粒度,(3)合作和倡导。与会者描述了在遵守州和联邦法律的同时优先考虑青少年的健康和安全的中心重要性。然而,关于如何优先考虑健康和安全,以及父母在支持青少年的医疗保健方面应该扮演什么角色,有不同的看法。与会者还确定了临床医生和机构可以倡导青少年的领域,特别是电子健康记录供应商和立法者。
    结论:信息学管理员为青少年门户访问政策提供了指导原则,旨在平衡青少年保密和门户有用性的竞争需求。门户访问政策必须优先考虑青少年的健康和安全,同时遵守州和联邦法律。然而,机构必须确定如何最好地制定这些原则。机构和临床医生应努力就原则达成共识,以加强机构领导的宣传工作,电子健康记录供应商,和立法者。
    BACKGROUND: Web-based patient portals are tools that could support adolescents in managing their health and developing autonomy. However, informatics administrators must navigate competing interests when developing portal access policies for adolescents and their parents.
    OBJECTIVE: We aimed to assess the perspectives of informatics administrators on guiding principles for the development of web-based health care portal access policies in adolescent health care.
    METHODS: We interviewed informatics administrators from US hospitals with ≥50 dedicated pediatric beds. We performed a thematic analysis of guiding principles for developing and implementing adolescent portal access policies.
    RESULTS: We interviewed 65 informatics leaders who represented 63 pediatric hospitals, 58 health care systems, 29 states, and 14,379 pediatric hospital beds. Participants described 9 guiding principles related to three overarching themes: (1) balancing confidentiality and other care needs, (2) balancing simplicity and granularity, and (3) collaborating and advocating. Participants described the central importance of prioritizing the health and safety of the adolescent while also complying with state and federal laws. However, there were differing beliefs about how to prioritize health and safety and what role parents should play in supporting the adolescent\'s health care. Participants also identified areas where clinicians and institutions can advocate for adolescents, especially with electronic health record vendors and legislators.
    CONCLUSIONS: Informatics administrators provided guiding principles for adolescent portal access policies that aimed to balance the competing needs of adolescent confidentiality and the usefulness of the portal. Portal access policies must prioritize the adolescent\'s health and safety while complying with state and federal laws. However, institutions must determine how to best enact these principles. Institutions and clinicians should strive for consensus on principles to strengthen advocacy efforts with institutional leadership, electronic health record vendors, and lawmakers.
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