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PubMedDate not supplied

Blood from a turnip. Financial models in case management.

The Baptist Health System has saved more than $5.4 million in a 3-year period as a result of its comprehensive case management program. The key to its success has been the pairing of financial cost data with key clinical information. Sharing this information with physicians and employing clinical experts as case managers has dramatically affected patient care across the continuum at the Baptist Health System. With more than 8 years of case management experience, the Baptist Health System's financial model has evolved into a concise method of measuring cost at the patient/day level. This cost information is analyzed by team members and used to improve patient care. At the core of this process is the case manager. By providing the case manager with the resources necessary, any healthcare institution can achieve significant financial savings and clinical process improvement.

Case Management↗
PubMed1997

Familial cavernous malformations in a large French kindred: mapping of the gene to the CCM1 locus on chromosome 7q.

OBJECTIVES: To characterise clinically a large French family affected with cerebral cavernomas and to check for linkage of this condition to chromosome 7. METHODS: A family, originating from Normandy and in which five members had undergone surgery for cavernomas, was extended. All members older than 18 were studied clinically and by neuroimaging. Genetic linkage analysis was conducted using 11 polymorphic microsatellite markers located between D7S502 and D7S479. RESULTS: The family included three generations. Among the 25 members investigated, 11 had an abnormal cerebral MRI, eight of them being symptomatic, and 12 were asymptomatic with a normal MRI. The status of the two remaining members could not be established on the basis of clinical and MRI data. The family reported shares some striking features with other previously linked families--namely, a high clinical penetrance and the presence of multiple lesions within most of the affected members. A lod score of 4.04 was obtained with marker D7S657 with no recombinant. Significant lod scores were also obtained with D7S524 (Zmax=3.32 at 0=0.00) and D7S630 (Zmax=3.44 at 0=0.00). These results establish linkage of the condition found in this family to chromosome 7. Haplotype analysis strongly suggests that the gene is telomeric to D7S802 and centromeric to D7S479. CONCLUSIONS: These data confirm linkage of cerebral cavernous malformations to chromosome 7 in a non-Hispanic family.

Adolescent↗
PubMedDate not supplied

A defined minimum data set. Will it work for direct patient care?

As health care becomes geographically and institutionally distributed, sharing clinical information becomes necessary for efficiency but harder to achieve. The computerization of patient data promises to facilitate its sharing and reuse. The kind and specificity of data needed, however, vary with the intended use, so defining a data set that is limited in size but broad in application has been problematic. Collecting information that is relevant to direct patient care, and useful for ancillary purposes, requires an understanding of how clinical data are recorded and used. There must be agreement on the vocabulary and the definitions of words. To support clinical decision-making, it must be possible to represent information at various cognitive levels and to different degrees of specificity. Accommodation of ambiguity and uncertainty should be possible. The contextual, temporal, and relational properties of clinical facts must be capable of representation in the data that are shared.

Data Collection↗
PubMed1998

Ophthalmology undergraduate education in Canada.

OBJECTIVE: To compile a database recording components of undergraduate education in ophthalmology in Canada. DESIGN: Mailed questionnaire survey. SETTING: The 16 Canadian medical schools. PARTICIPANTS: All ophthalmology undergraduate program directors. OUTCOME MEASURES: Teaching hours, subjects and clinical skills taught, examination methods. RESULTS: Almost all schools covered a similar curriculum and used multiple-choice examinations. The number of hours devoted to preclerkship teaching was similar, but only seven schools had a mandatory clerkship rotation. Overall, 69% of the annual graduating medical school class receive clinical exposure to ophthalmology during their clerkship. Almost all schools provided electives that were similar in structure. CONCLUSIONS: There was great similarity in the curricula for medical student teaching in Canada. Efforts should be undertaken to increase the proportion of medical students receiving clinical teaching in ophthalmology. Increased coordination and collaboration in undergraduate teaching can be achieved in specific areas with future data sharing.

Canada↗
PubMed1989

Continuity of care. Development and implementation of a shared patient data base.

Although the inpatient Oncology Unit, the Medical Oncology Clinic, and Radiation Oncology provided care for many of the same patients, there was no mechanism for sharing nursing information, and little colleague input from one area to another. In order to meet this need, a nurse from each of the clinic areas was added to the inpatient unit's Patient Care Evaluation Committee. Working through this committee, these nurses developed an Inpatient/Outpatient Data Flow Sheet, which could be initiated in any oncology area to implement information flow when a patient was to be seen in a different setting. It proved to be an effective tool. The flow sheet, along with our rationale, was then presented for consideration as a computerized program to be used between the three areas. After careful investigation, it was approved. This provided the oncology areas with the first data storage capability for nursing in the hospital. It offered oncology nurses in distinct and separate areas access to obtain and update information on shared patients. This manuscript will focus on the computer program and the data base designed for the oncology department and its impact on nurses and patients.

Cancer Care Facilities↗
PubMed1997

A natural language parsing system for encoding admitting diagnoses.

Free-text or natural language documents make up an increasing part of the computerized medical record. While they do provide accessible clinical information to health care personnel, they fail to support processes that require clinical data coded according to a shared lexicon and data structure. We have developed a natural language parser that converts free-text admitting diagnoses into a coded form. This application has proven acceptably accurate in the experimental laboratory to warrant a test in the target clinical environment. Here we describe an approach to moving this research application into a production environment where it can contribute to the efforts of the Health Information Services Department. This transition is essential if the products of natural language understanding research are to contribute to patient care in a routine and sustainable way.

Diagnosis-Related Groups↗
PubMed2005

Cross-institutional data exchange using the clinical document architecture (CDA).

PROBLEM: Although electronic communication of clinical data between various actors in the healthcare domain seems crucial for a cost-effective patient treatment, it is mostly restricted to paper based documents. In order to meet the growing need for improved data communication, it is necessary to overcome the barriers of software heterogeneity and lack of standards, especially in cross-institutional shared care communication. HL7's clinical document architecture (CDA) is a new and promising tool to exchange any clinical document. In this paper we show how CDA can be used to (1) share electronic discharge letters and other clinical data generated and stored in the hospitals electronic patient record (EPR) with general practitioners and (2) to transfer these clinical data to a personal electronic health record (EHR). The latter scenario is in routine use. Ease-of-use and data security and integrity were the main design principles in both scenarios. METHODS: Within the electronic patient record a data extraction and exporting mechanism has been built. For both scenarios appropriate data processing and transmission methods have been developed, and the receiving information systems have been prepared for the CDA based data input. RESULTS: Although there still remain technical and organizational issues to be solved, this is a promising method in order to enhance data exchange between hospital and primary care and to move towards an electronic patient record (EPR) and an electronic health record (EHR) crossing institutional borders. This paper describes the design and current implementation and discusses our experiences.

Germany↗
PubMed1997

Development of an enterprise-wide clinical data repository: merging multiple legacy databases.

We describe the development of a clinical data repository whose core consists of four years of inpatient administrative and billing data from the mainframe legacy systems of the University of Virginia Health System (UVAHS). To these data we have linked a cardiac surgery clinical database and our physician billing data (inpatient and outpatient). Other databases will be merged in the future. A relational database management system (Sybase) running on a dedicated IBM RS/6000 minicomputer was employed to assemble 2.5 Gigabytes of core data describing approximately 100,000 hospital admissions over the four year period. To enable convenient data queries, the system has been equipped with a custom-built WWW user interface, which generates Structured Query Language (SQL) automatically. We illustrate the rapid reporting capabilities of the resulting system with reference to patients undergoing coronary artery bypass graft surgery (CABG). We conclude that this information system: a) constitutes a convenient and low-cost method to increase data availability across the UVAHS; b) provides clinicians with a tool for surveillance of patient care and outcomes; c) forms the core of a comprehensive database from which clinical research may proceed; d) provides a flexible interface empowering a wide variety of clinical departments to share and enrich their own clinical data.

Computer Communication Networks↗
PubMed2006

Standardized exchange of clinical documents--towards a shared care paradigm in glaucoma treatment.

OBJECTIVES: The exchange of medical data from research and clinical routine across institutional borders is essential to establish an integrated healthcare platform. In this project we want to realize the standardized exchange of medical data between different healthcare institutions to implement an integrated and interoperable information system supporting clinical treatment and research of glaucoma. METHODS: The central point of our concept is a standardized communication model based on the Clinical Document Architecture (CDA). Further, a communication concept between different health care institutions applying the developed document model has been defined. RESULTS: With our project we have been able to prove that standardized communication between an Electronic Medical Record (EMR), an Electronic Health Record (EHR) and the Erlanger Glaucoma Register (EGR) based on the established conceptual models, which rely on CDA rel.1 level 1 and SCIPHOX, could be implemented. The HL7-tool-based deduction of a suitable CDA rel.2 compliant schema showed significant differences when compared with the manually created schema. Finally fundamental requirements, which have to be implemented for an integrated health care platform, have been identified. CONCLUSIONS: An interoperable information system can enhance both clinical treatment and research projects. By automatically transferring screening findings from a glaucoma research project to the electronic medical record of our ophthalmology clinic, clinicians could benefit from the availability of a longitudinal patient record. The CDA as a standard for exchanging clinical documents has demonstrated its potential to enhance interoperability within a future shared care paradigm.

Computer Communication Networks↗
PubMed2005

Genetic insights into disease mechanisms of autoimmunity.

Educating the immune system to distinguish between self and non-self is critical to ensure that an immune response is mounted against foreign antigens and not against self. A breakdown in these mechanisms can lead to the onset of autoimmune disease. Clinical and molecular data suggest that shared immunogenetic mechanisms lead to the autoimmune process. The most studied genes and molecules are the human leukocyte antigen (HLA) region and the cytotoxic T-lymphocyte-associated 4 molecule (CTLA-4). Recently progress has been achieved in narrowing down the primary variants within both gene regions, but further work is needed to determine the function and extent of the aetiological variant(s) present. Recent exciting results also suggest a role for the newly discovered lymphoid-specific phosphatase (LYP) protein. As well as these general mechanisms, disease-specific mechanisms are beginning to be elucidated, for example the role of autoimmune regulatory element 1 (AIRE1) in autoimmune polyendocrinopathy-candidiasis ectodermal dystrophy (APECED). Taken together, these data suggest that both general and disease-specific mechanisms lead to the clinical outcome of autoimmune disease and that increased understanding of these mechanisms will improve our knowledge of how autoimmune disease occurs, eventually leading to the development of novel therapeutic agents.

Antigens, CD↗
PubMed2026

NoisyFlow: differentially private optimal transport using neural networks for secure biomedical data sharing across multiple institutions.

MOTIVATION: Biomedical models improve when trained on data pooled across institutions, but sensitive patient records (e.g. genomics, clinical data, and medical images) are difficult to share due to privacy constraints. Moreover, data collected at different sites often have shifted distributions because of covariate differences (including batch effects), so privacy-preserving sharing alone cannot simply resolve cross-site mismatch. Methods that protect individuals while explicitly aligning distributions are needed to enable reliable multi-institutional analyses. RESULTS: We present NoisyFlow, a three-stage differentially private framework for cross-institutional harmonization under distribution shift. In stage I, each site learns a differentially private flow-based generator of its local labeled distribution. In stage II, it learns a neural optimal transport map to a shared reference distribution. In stage III, a central server composes the released models to generate reference-aligned pseudo-data for downstream analysis without accessing raw records. Across four biomedical settings spanning single-cell genomics, histopathology, neurogenomics, and wearable sensing, NoisyFlow reduces distribution shift while preserving downstream utility under formal differential privacy guarantees. AVAILABILITY AND IMPLEMENTATION: The implementation of NoisyFlow is available at https://github.com/gersteinlab/NoisyFlow.

Information Dissemination↗
PubMed2004

Migraine: a chronic sympathetic nervous system disorder.

OBJECTIVES: To determine the degree of diagnostic and clinical similarity between chronic sympathetic nervous system disorders and migraine. BACKGROUND: Migraine is an episodic syndrome consisting of a variety of clinical features that result from dysfunction of the sympathetic nervous system. During headache-free periods, migraineurs have a reduction in sympathetic function compared to nonmigraineurs. Sympathetic nervous system dysfunction is also the major feature of rare neurological disorders such as pure autonomic failure and multiple system atrophy. There are no known reports in the medical literature, however, comparing sympathetic nervous system function in individuals with migraine, pure autonomic failure, and multiple system atrophy. METHODS: A detailed review of the literature was performed to compare the results of a wide variety of diagnostic tests and clinical signs that have been described in these 3 heretofore unrelated disorders. RESULTS: The data indicate that migraine shares significant diagnostic and clinical features with both pure autonomic failure and multiple system atrophy, yet represents a distinct subtype of chronic sympathetic dysfunction. Migraine is most similar to pure autonomic failure in terms of reduced supine plasma norepinephrine levels, peripheral adrenergic receptor supersensitivity, and clinical symptomatology directly related to sympathetic nervous system dysfunction. The peripheral sympathetic nervous system dysfunction is much more severe in pure autonomic failure than in migraine. Migraine differs from both pure autonomic failure and multiple system atrophy in that migraineurs retain the ability, although suboptimal, to increase plasma norepinephrine levels following physiological stressors. CONCLUSIONS: The major finding of the present study is that migraine is a disorder of chronic sympathetic dysfunction, sharing many diagnostic and clinical characteristics with pure autonomic failure and multiple system atrophy. However, the sympathetic nervous system dysfunction in migraine differs from pure autonomic failure and multiple system atrophy in that occurs in an anatomically intact system. It is proposed that the sympathetic dysfunction in migraine relates to an imbalance of sympathetic co-transmitters. Specifically, it is suggested that a migraine attack is characterized by a relative depletion of sympathetic norepinephrine stores in conjunction with an increase in the release of other sympathetic cotransmitters such as dopamine, prostaglandins, adenosine triphosphate, and adenosine. An enhanced understanding of the sympathetic dysfunction in migraine may help to more effectively diagnose, prevent, and/or treat migraine and other types of headache.

Autonomic Nervous System Diseases↗
PubMed1996

The pathophysiology of diabetic complications: how much does the glucose hypothesis explain?

OBJECTIVE: To examine the putative pathogenetic mechanisms of the long-term, specific complications of diabetes mellitus. DATA SOURCES: Literature review relevant to long-term diabetic complications and their pathogenesis. STUDY SELECTION: Studies of animal models of diabetes, epidemiologic investigations of diabetes and its long-term complications, and interventional studies examining intensive treatment of diabetes and its effect on the development and progression of complications. DATA SYNTHESIS: Diabetic retinopathy, nephropathy, and neuropathy occur in all clinical forms of diabetes mellitus, regardless of the cause of the diabetes. Hyperglycemia appears to be the major variable shared among these different clinical forms; and epidemiologic data, studies in animal models of diabetes, and the results of recent interventional studies such as the Diabetes Control and Complications Trial, all support an important and perhaps dominant role of hyperglycemia in the pathogenesis of complications. However, the diverse complications may not share the same pathogenesis. Different pathogenetic mechanisms may operate in different types of diabetic complications or at different stages of specific complications, or both. CONCLUSIONS: The level of chronic glycemia is the best established concomitant factor associated with diabetic complications. The mechanism by which hyperglycemia might cause complications remains unknown, and evidence for a uniform pathogenetic mechanism is far from established.

Animals↗
PubMedDate not supplied

Early history of pathology studies by the Intergroup Rhabdomyosarcoma Study Group.

This review chronicles the series of publications that were the result of the willingness of pathologists and clinicians in the United States to share their pathologic materials and clinical data on patients who were placed on treatment protocols for rhabdomyosarcoma and related tumors over an extended period of time. The availability of this database enabled pathologists and clinicians to study a tumor type that is rare in individual institutions, but occurs in large enough numbers to produce valid conclusions not otherwise possible. Furthermore, young investigators were challenged by this opportunity and were able to spend the necessary time to make new observations that, in retrospect, helped direct protocol designs that produced significant improvement in patient survival. The key factor in this process is the surrender of individual scientific prerogatives to a small number of investigators. It is also important to recognize that the pathologist component of these series of contributions is only a part of the entire effort. It takes an organization of gifted, dedicated experts in many disciplines working together. The investigators who served on the Intergroup Rhabdomyosarcoma Group over a 25-year period eminently fulfilled this.

Child↗
PubMed1998

Access control and system audit based on "patient-doctor relation and clinical situation" model.

Both confidentiality of privacy and the data sharing between healthcare practitioners are required in hospital information systems. A new access control method has been designed by the "patient-doctor relation and clinical situation at the point-of-care" model in addition to the traditional "account and password" mechanism. This method can; (I) allow flexible data access in need, (2) afford accurate access audit, (3) suppress inappropriate access.

Computer Security↗
PubMed2004

Studies in emergency department data collection: shared versus split responsibility for patient enrollment.

OBJECTIVES: To compare patient enrollment in six clinical studies using shared coverage (24 emergency department [ED] rooms-two students share enrollment responsibility) with enrollment using split coverage (12 rooms each per student). The academic associate (AA) program uses undergraduate students to collect data for clinical studies in the ED by providing double coverage 16 hours/day, seven days/week. Prior studies have shown that this system captures >85% of eligible patients. Methods to obtain closer to 100% enrollment are desired. METHODS: During consecutive 15-day periods with the same 24 AAs, the daily ED census, hours of AA coverage, and enrollment in each of six studies were evaluated prospectively in the ED. Data are presented as means with 95% confidence intervals (CIs). RESULTS: There was no difference between the shared and split enrollment periods with respect to hours of AA coverage (30.3 vs. 30.7 hours/day; p = 0.7) or average daily ED census (133.7 vs. 141.8; p = 0.15). Overall, the percentages of ED patients recruited for study participation were not different depending on whether the split versus shared recruitment strategy was used (907 patients recruited out of 2005 ED patients (45.2%; 95% CI = 43.0 to 47.4) vs. 937 of 2127 (44.0%; 95% CI = 41.9 to 46.1). The 95% CI for the 1.2% difference was -1.8% to 4.2%. Patient enrollments in six individual studies were similar regardless of recruitment strategy. Following the 30-day trial, AAs were surveyed: 17 of 24 (71%) found the split strategy to be "more helpful in enrolling subjects," and 20 of 24 (83%) found split strategy helped them "keep better track" of patients. CONCLUSIONS: Study subject enrollment was not affected by the use of either the shared or split responsibility strategy for recruitment. Students generally preferred the split strategy because it was more helpful and easier to monitor. Therefore, this may be the best option for similar student-oriented data collection programs.

Data Collection↗
PubMed1996

Knowledge-based temporal abstraction in clinical domains.

We have defined a knowledge-based framework for the creation of abstract, interval-based concepts from time-stamped clinical data, the knowledge-based temporal-abstraction (KBTA) method. The KBTA method decomposes its task into five subtasks; for each subtask we propose a formal solving mechanism. Our framework emphasizes explicit representation of knowledge required for abstraction of time-oriented clinical data, and facilitates its acquisition, maintenance, reuse and sharing. The RESUME system implements the KBTA method. We tested RESUME in several clinical-monitoring domains, including the domain of monitoring patients who have insulin-dependent diabetes. We acquired from a diabetes-therapy expert diabetes-therapy temporal-abstraction knowledge. Two diabetes-therapy experts (including the first one) created temporal abstractions from about 800 points of diabetic-patients' data. RESUME generated about 80% of the abstractions agreed by both experts; about 97% of the generated abstractions were valid. We discuss the advantages and limitations of the current architecture.

Artificial Intelligence↗