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Identifying Patients with Rare Disease Using Electronic Health Record Data: The Kaiser Permanente Southern California Membranous Nephropathy Cohort.

ABSTRACT: INTRODUCTION:Developing a reliable means to identify and study real-world populations of patients with membranous nephropathy (MN) using electronic health records (EHRs) would help advance glomerular disease research. Identifying MN cases using EHRs is limited by the need for manual reviews of biopsy reports. OBJECTIVE:To evaluate the accuracy of identifying patients with biopsy-proven MN using the EHR in a large, diverse population of an integrated health system. METHODS:A retrospective cohort study was performed between June 28, 1999, and June 25, 2015, among patients with kidney biopsy results (N = 4723), which were manually reviewed and designated as MN or non-MN. The sensitivity, specificity, and positive predictive value (PPV) of International Classification of Diseases, Ninth Revision (ICD-9) diagnosis codes were determined using 2 approaches: 1) clinical (MN-specific codes 581.1, 582.1, or 583.1) and 2) agnostic/data-derived (codes selected from supervised learning at the highest predictive performance). RESULTS:One year after biopsy, the sensitivity and specificity of an MN diagnosis were 86% and 76%, respectively, but the PPV was 26%. The data-driven approach detected that using only 2 codes (581.1 or 583.1) improved specificity to 94% and PPV to 58%, with a small decrease in sensitivity to 83%. When any code was reported at least 3 times, specificity was 98%; PPV, 78%; and sensitivity, 64%. DISCUSSION:Our findings suggest that ICD-9 diagnosis codes might be a convenient tool to identify patients with MN using EHR and/or administrative claims information. Codes selected from supervised learning achieved better overall performance, suggesting the potential of developing data-driven methods.

SUBMITTER: Sun AZ

PROVIDER: S-EPMC7021143 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Identifying Patients with Rare Disease Using Electronic Health Record Data: The Kaiser Permanente Southern California Membranous Nephropathy Cohort.

Sun Amy Z AZ Shu Yu-Hsiang YH Harrison Teresa N TN Hever Aviv A Jacobsen Steven J SJ O'Shaughnessy Michelle M MM Sim John J JJ

The Permanente journal 20200207

<h4>Introduction</h4>Developing a reliable means to identify and study real-world populations of patients with membranous nephropathy (MN) using electronic health records (EHRs) would help advance glomerular disease research. Identifying MN cases using EHRs is limited by the need for manual reviews of biopsy reports.<h4>Objective</h4>To evaluate the accuracy of identifying patients with biopsy-proven MN using the EHR in a large, diverse population of an integrated health system.<h4>Methods</h4>A ...[more]

PMID: 32069207

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Project description:BackgroundThe Kaiser Permanente model of integrated health delivery is highly regarded for high-quality and efficient health care. Efforts to reproduce Kaiser's success have mostly failed. One factor that has received little attention and that could explain Kaiser's advantage is its commitment to and investment in nursing as a key component of organizational culture and patient-centered care.PurposeThe aim of this study was to investigate the role of Kaiser's nursing organization in promoting quality of care.MethodologyThis was a cross-sectional analysis of linked secondary data from multiple sources, including a detailed survey of nurses, for 564 adult, general acute care hospitals from California, Florida, Pennsylvania, and New Jersey in 2006-2007. We used logistic regression models to examine whether patient (mortality and failure-to-rescue) and nurse (burnout, job satisfaction, and intent-to-leave) outcomes in Kaiser hospitals were better than in non-Kaiser hospitals. We then assessed whether differences in nursing explained outcomes differences between Kaiser and other hospitals. Finally, we examined whether Kaiser hospitals compared favorably with hospitals known for having excellent nurse work environments-Magnet hospitals.FindingsPatient and nurse outcomes in Kaiser hospitals were significantly better compared with non-Magnet hospitals. Kaiser hospitals had significantly better nurse work environments, staffing levels, and more nurses with bachelor's degrees. Differences in nursing explained a significant proportion of the Kaiser outcomes advantage. Kaiser hospital outcomes were comparable with Magnet hospitals, where better outcomes have been largely explained by differences in nursing.ImplicationsAn important element in Kaiser's success is its investment in professional nursing, which may not be evident to systems seeking to achieve Kaiser's advantage. Our results suggest that a possible strategy for achieving outcomes like Kaiser may be for hospitals to consider Magnet designation, a proven and cost-effective strategy to improve process of care through investments in nursing.

Project description:BackgroundElectronic health record (EHR)-based disease registries have aided health care professionals and researchers in increasing their understanding of chronic illnesses, including identifying patients with (or at risk of developing) conditions and tracking treatment progress and recovery. Despite excessive alcohol use being a major contributor to the global burden of disease and disability, no registries of alcohol problems exist. EHR-based data in Kaiser Permanente Northern California (KPNC), an integrated health system that conducts systematic alcohol screening, which provides specialty addiction medicine treatment internally and has a membership of over 4 million members that are highly representative of the US population with access to care, provide a unique opportunity to develop such a registry.ObjectiveOur objectives were to describe the development and implementation of a protocol for assembling the KPNC Adult Alcohol Registry, which may be useful to other researchers and health systems, and to characterize the registry cohort descriptively, including underlying health conditions.MethodsInclusion criteria were adult members with unhealthy alcohol use (using National Institute on Alcohol Abuse and Alcoholism guidelines), an alcohol use disorder (AUD) diagnosis, or an alcohol-related health problem between June 1, 2013, and May 31, 2019. We extracted patients' longitudinal, multidimensional EHR data from 1 year before their date of eligibility through May 31, 2019, and conducted descriptive analyses.ResultsWe identified 723,604 adult patients who met the registry inclusion criteria at any time during the study period: 631,780 with unhealthy alcohol use, 143,690 with an AUD diagnosis, and 18,985 with an alcohol-related health problem. We identified 65,064 patients who met two or more criteria. Of the 4,973,195 adult patients with at least one encounter with the health system during the study period, the prevalence of unhealthy alcohol use was 13% (631,780/4,973,195), the prevalence of AUD diagnoses was 3% (143,690/4,973,195), and the prevalence of alcohol-related health problems was 0.4% (18,985/4,973,195). The registry cohort was 60% male (n=432,847) and 41% non-White (n=295,998) and had a median age of 41 years (IQR=27). About 48% (n=346,408) had a chronic medical condition, 18% (n=130,031) had a mental health condition, and 4% (n=30,429) had a drug use disorder diagnosis.ConclusionsWe demonstrated that EHR-based data collected during clinical care within an integrated health system could be leveraged to develop a registry of patients with alcohol problems that is flexible and can be easily updated. The registry's comprehensive patient-level data over multiyear periods provides a strong foundation for robust research addressing critical public health questions related to the full course and spectrum of alcohol problems, including recovery, which would complement other methods used in alcohol research (eg, population-based surveys, clinical trials).

Project description:BACKGROUND:Five-year survival on dialysis is only 40%, compared to 74% with a deceased donor kidney transplant (DDKT) and 87% with a living donor kidney transplant (LDKT). An American Society of Transplantation (AST) Consensus Conference recommended that patients with chronic kidney disease (CKD) Stages 3-5 have the opportunity to learn about and decide which treatment option is right for them, particularly about LDKT. However, early education about LDKT and DDKT outside of transplant centers is inconsistent and often poor, with patients in CKD 3 and 4 and ethnic/racial minorities even less likely to receive it. A new randomized control trial (RCT), in partnership with Kaiser Permanente Southern California (KPSC), will assess knowledge gaps and the effectiveness of a supplementary video-guided, print and technology-based education intervention for English- and Spanish-speaking patients in CKD Stages 3, 4, and 5 to increase LDKT knowledge and decision-making. To date, no published LDKT educational interventions have studied such a large and diverse CKD population. METHODS:In this RCT, 1200 English and Spanish-speaking CKD Stage 3-5 patients will be randomly assigned to one of two education conditions: ET@Home or KPSC standard of care education. Randomization will be stratified by CKD stage and primary language spoken. Those in the ET@Home condition will receive brochures, postcards, DVDs, and text messages delivering educational content in modules over a six-month period. Baseline data collection will measure demographics, transplant derailers, and the amount of previous CKD and transplant education they have received. Changes in CKD and transplant knowledge, ability to make an informed decision about transplant, and self-efficacy to pursue LDKT will be captured with surveys administered at baseline and at six months. DISCUSSION:At the conclusion of the study, investigators will understand key knowledge gaps for patients along the CKD continuum and between patients who speak different languages and have assessed the effectiveness of both English- and Spanish-language supplementary education in increasing KPSC patients' knowledge about the opportunities for and risks and benefits of LDKT. We hope this program will reduce disparities in access to transplant. TRIAL REGISTRATION:ClinicalTrials.gov Identifier: NCT03389932; date registered: 12/26/2017.

Project description:BackgroundTo inform Danish health care reform efforts, we compared health care system inputs and performance and assessed the usefulness of these comparisons for informing policy.MethodsRetrospective analysis of secondary data in the Danish Health Care System (DHS) with 5.3 million citizens and the Kaiser Permanente integrated delivery system (KP) with 6.1 million members in California. We used secondary data to compare population characteristics, professional staff, delivery structure, utilisation and quality measures, and direct costs. We adjusted the cost data to increase comparability.ResultsA higher percentage of KP patients had chronic conditions than did patients in the DHS: 6.3% vs. 2.8% (diabetes) and 19% vs. 8.5% (hypertension), respectively. KP had fewer total physicians and staff compared to DHS, with 134 physicians/100,000 individuals versus 311 physicians/100,000 individuals. KP physicians are salaried employees; in contrast, DHS primary care physicians own and run their practices, remunerated by a mixture of capitation and fee-for-service payments, while most specialists are employed at largely public hospitals. Hospitalisation rates and lengths of stay (LOS) were lower in KP, with mean acute admission LOS of 3.9 days versus 6.0 days in the DHS, and, for stroke admissions, 4.2 days versus 23 days. Screening rates also differed: 93% of KP members with diabetes received retinal screening; only 46% of patients in the DHS with diabetes did. Per capita operating expenditures were PPP$1,951 (KP) and PPP $1,845 (DHS).ConclusionCompared to the DHS, KP had a population with more documented disease and higher operating costs, while employing fewer physicians and resources like hospital beds. Observed quality measures also appear higher in KP. However, simple comparisons between health care systems may have limited value without detailed information on mechanisms underlying differences or identifying translatable care improvement strategies. We suggest items for more in-depth analyses that could improve the interpretability of findings and help identify lessons that can be transferred.

Dataset Information

Identifying Patients with Rare Disease Using Electronic Health Record Data: The Kaiser Permanente Southern California Membranous Nephropathy Cohort.

Publications

Identifying Patients with Rare Disease Using Electronic Health Record Data: The Kaiser Permanente Southern California Membranous Nephropathy Cohort.

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