Search PubMed⌕ Search

SEARCH · Search PubMed

Results for “clinical data sharing”

Search indexed PubMed citations on genomics, clinical trials, systematic reviews and public health. Explore titles, authors and supplied subject terms, then open the PubMed record.

Quote a phrase for an exact phrase match. Source license links do not imply unrestricted reuse.

At least 163 records · Page 9Linked to original sources

The registration function as a critical dependency in a lifetime clinical record (LCR).

Over the past two years, we have successfully migrated the Regenstrief Clinical Information System into our hospital. Integral to this process was the need to develop interfaces and processes supporting movements of patient identification data between the existing clinical management system (Unity, SMS) and Carebase (RCIS). Critical to the implementation of Carebase was the development of an interface between Carebase and the registration system based upon a unique medical record number. Even more critical was the development of stable processes that supported the accurate patient identification and assignment of medical record numbers. The medical record number at our institution is assigned or verified at the time of registration. Major problems occurred when patients presented during system down-times and existing medical record numbers could not be accessed, resulting in multiple registrations and medical record numbers for the same patient. This resulted in data fragmentation and required merging at a later date. Other more serious problems resulted from the assignment of the same medical record number to separate patients and with the mixing of data from multiple patients into one patient record. This was largely due to the failure of clerical personnel to appropriately identify patients at the time of registration, or multiple patients sharing identification documents, a common problem in our geographic area. Given that clinical data was to be maintained and added to the repository for several decades, errors such as these in registration would prove catastrophic. The interfaces between the various clinical systems that pass data to Carebase are all HL-standard and largely prevent data passage if registration data is inaccurate. During the early stages of implementation, approximately 300 exceptions per day were generated from clinical systems attempting to pass data to the repository. Following re¿engineering of the registration process, education of clerical personnel, and analysis of exception type, the number of exceptions due to faulty registration data fell to less than one per week. To achieve improvement in exception volume, several innovative measures were undertaken. Firstly, down-time procedures were changed to require query of the LCR for existing registration data. The LCR was maintained on a separate platform that experienced essentially no down-time and was available for this purpose. This largely eliminated the need for the use of "down-time numbers" or medical record numbers that could be temporarily assigned to patients registered when the registration system was unavailable (data would subsequently be merged into existing patient records if the patient was found to be currently in the system). If the patient was not in the LCR, then a permanent number was assigned in sequence. A registration dataset was developed and encoded onto a magnetic card (Carecard, Eltrax) and carried by patients. This enabled the rapid verification of registration data on subsequent visits to the parent institution or affiliated clinical sites. The issue of fraudulent use of the card and encoded registration dataset, however, remained problematic. Currently, a new imaging system is being installed that will soon enable the inclusion of a photograph of the patient as a component of the registration dataset. Perhaps the most significant change in the registration process involved the education of central registration and admitting personnel. An educational program was developed that reinforced the need for accuracy in collecting registration data, identifying patients, and assigning medical record numbers; more importantly, it stressed the linkage of the registration function and patient care. Lastly, an aggressive approach to monitoring exceptions resulting from errors in registration was developed. A near real-time process for identifying errors in registrations allowed for rapid intervention and feedback to involved de

Medical Records Systems, Computerized↗

[A new tool for retrieving clinical data from various sources].

BACKGROUND: A doctor's tool for extracting clinical data from various sources on groups of hospital patients into one file has been in demand. For this purpose we evaluated Qlikview. MATERIAL AND METHODS: Based on clinical information required by two cardiologists, an IT specialist with thorough knowledge of the hospital's data system (www.dips.no) used 30 days to assemble one Qlikview file. Data was also assembled from a pre-hospital ambulance system. RESULTS: The 13 Mb Qlikview file held various information on 12430 patients admitted to the cardiac unit 26,287 times over the last 21 years. Included were also 530,912 clinical laboratory analyses from these patients during the past five years. Some information required by the cardiologists was inaccessible due to lack of coding or data storage. Some databases could not export their data. Others were encrypted by the software company. A major part of the required data could be extracted to Qlikview. Searches went fast in spite of the huge amount of data. Qlikview could assemble clinical information to doctors from different data systems. Doctors from different hospitals could share and further refine empty Qlikview files for their own use. When the file is assembled, doctors can, on their own, search for answers to constantly changing clinical questions, also at odd hours.

Cardiology Service, Hospital↗

Marginal zone B-cell lymphomas of different sites share similar cytogenetic and morphologic features.

Clinical, histologic, cytogenetic, and molecular genetic data of 31 patients with extranodal, nodal, and splenic marginal zone B-cell lymphoma (MZBCL) are presented. Despite these variable clinical manifestations, a similar spectrum of morphologic features as well as distinctive immunophenotypic findings were noted. In all cases, a monotypic B-cell proliferation consistently negative for CD5, CD10, and CD23 was found expanding the marginal zone of the B follicle with and without colonization of the follicle centers. Clonal chromosomal abnormalities were detected in 23 of the 31 patients. Recurrent aberrations included whole or partial trisomy 3 (18 cases), trisomy 18 (9 cases), and structural rearrangements of chromosome 1 with breakpoints in 1q21 (9 cases) or 1p34 (6 cases), all of which were seen in extranodal, nodal, as well as splenic MZBCL. Abnormalities of the additional chromosome 3, such as +del(3)(p13),+i(3)(q10), or structural changes involving the distal part of the long arm, were evident in 9 of the 18 cases. All recurrent abnormalities were found in MZBCL more frequently than in other histologic entities of B-cell non-Hodgkin's lymphoma (B-NHL). None of the known lymphoma-associated chromosomal changes or rearrangements of the BCL1, BCL2, BCL3, BCL6, and CMYC genes were detected. We conclude that MZBCL represent a distinct entity of B-NHL with characteristic morphologic and immunophenotypic features and particular chromosomal abnormalities, and that a close histogenetic relationship between extranodal, nodal, and splenic MZBCL is likely, although the clinical presentation may vary.

Adult↗

MedView: a declarative approach to evidence-based medicine.

MedView is a project that meets the challenges of evidence-based oral medicine by providing a formalisation of clinical examination data and clinical procedures. Tools are provided for knowledge acquisition, knowledge generation, visualisation and analysis of data, and knowledge sharing. The formal declarative model constitutes the main governing principle in MedView, not only in the formalisation of clinical terms and concepts, but in visualisation models and in the design and implementation of individual tools and the system as a whole as well.

Decision Support Systems, Clinical↗

The ASH HematOmics Program supports integrative analysis of genomic and clinical data in hematologic diseases.

The increasing availability of genomic and transcriptomic sequencing has uncovered diverse genomic alterations and distinct gene expression profiles driving hematologic diseases, yet a data integration and sharing platform dedicated to hematology remains lacking. We developed the American Society of Hematology (ASH) HematOmics Program (ASHOP; ashop.hematology.org), a resource for exploring somatic alterations and gene fusions, transcriptomic results, and clinical data from 5960 patients spanning B-cell precursor and T-cell acute lymphoblastic leukemia, acute myeloid leukemia, myelodysplastic syndromes, and chronic lymphocytic leukemia. Users can explore genomic alteration landscapes and comutation patterns via lollipop and matrix plots and analyze significantly altered genes in user-defined subcohorts. Transcriptomes can be explored through interactive uniform manifold approximation and projections, clustering, differential expression, and pathway enrichment. Genomic, transcriptomic features, and clinical outcomes can be correlated in a user-driven manner or combined to precisely define study cohorts. We illustrate the following 4 use cases of ASHOP: (1) stratification of DUX4-rearranged B-cell leukemias into Early/Multipotent and Committed subgroups with distinct outcomes, (2) characterization of HOXA/HOXB expression patterns in acute myeloid leukemias, (3) correlating mutational burden with mismatch repair deficiency and mutational signatures, and (4) investigation of TP53 alteration landscape. ASHOP is an open-access resource to inform genomic and transcriptomic data interpretation for hematologic malignancies and will expand to support additional diseases and data modalities from the ASH community.

Humans↗

Human herpesvirus 6 (HHV-6) is transmitted from parent to child in an integrated form and characterization of cases with chromosomally integrated HHV-6 DNA.

We obtained 7,566 peripheral blood mononuclear cell (PBMC) samples from 2,332 individuals and screened them for human herpesvirus infection. We identified five individuals who persistently harbored high copy numbers of human herpesvirus 6 (HHV-6) DNA in their PBMCs. HHV-6 DNA was also detected in other somatic tissues of these individuals. Five additional cases were identified among their family members. For two of these families, chromosomally integrated HHV-6 DNA (CIHHV-6) was detected in the PBMCs by fluorescence in situ hybridization. The prevalence of CIHHV-6 among all the subjects was 0.21%. The HHV-6 DNA was variant B in four families and variant A in one family. Antibodies to immediate early antigen and glycoprotein B were detected in 57 and 14% of individuals with CIHHV-6 and in 0 and 60% of healthy volunteers without CIHHV-6, respectively. HHV-6 could not be isolated from PBMCs with CIHHV-6. These cases shared no clinical features, and included three healthy individuals. Our data suggest that CIHHV-6 is rare but detectable in the general population and that hereditary transmission is one of the routes of HHV-6 transmission.

Antibodies, Viral↗

Achieving standardized photographs in aesthetic surgery.

The plastic surgeon who wishes to share clinical experience with colleagues is obligated to produce accurate data in the form of photographs. Moreover, accurate photographs are essential to enable an objective critical appraisal of one's own surgical skill and to display postoperative results to patients in an unbiased fashion. Change should not be a function of either the photograph or the photographer. The use of an acetate screen grid in conjunction with anatomic boundaries is described as a means to achieve accurate, reproducible standard photographs of the face and body in aesthetic surgical patients.

Acetates↗

Vital links for today and tomorrow. With one stage of MIS development complete, an integrated delivery network looks to the future.

Over the past four years, Provenant Health Partners (PHP), Denver, has been developing and implementing a management information system to meet the organization's current needs. The system consists of the following information networks: Internal management; Electronic claims processing; Purchasing; Physician communications; Clinic communications; Physician practices; Other hospitals,offnaged health. In the past, PHP used the system primarily for traditional management and control purposes. Recently, however, the organization has extended the use of its data outputs to include internal and external marketing purposes as well. Clinical, service, and management quality data are now tracked and shared with internal and external constituents. PHP is also working to develop a health information system for the future. Such a system will include all the components of the current management information system, but will also facilitate effective health management of populations enrolled in the organization's integrated delivery network.

Colorado↗

[The development of ethics. Identifying what training in medical ethics is needed by family physicians].

OBJECTIVE: To identify what training in medical ethics physician teachers need. DESIGN: Qualitative research study using a modified nominal group technique. SETTING: Family practice units affiliated with the Department of Family Medicine at Laval University in Quebec. PARTICIPANTS: Fifty-three physician teachers in six family practice units. METHOD: During seven meetings, the teachers shared information on clinical situations that had posed ethical problems. Data were analyzed using Strauss and Corbin's method. MAIN OUTCOME FINDINGS: The 277 clinical situations were classified under nine themes: ethics; confidentiality; consent, refusal of treatment, and the right to information; level of care and abstention from and cessation of treatment; relationships with pharmaceutical companies and the ethics of research; ethics of teaching; allocation of resources; influence of third parties; and euthanasia and assisted suicide. Learning objectives were developed. CONCLUSION: This research forms the basis of the ethics curriculum in the family medicine residency program at Laval University. It also offers a strategy for integrating ethics into daily teaching activities because the learning objectives derive directly from the concerns of the teaching faculty.

Adult↗

Clinical database. Structure, development strategies and expected clinical applications.

The paper provides the description of a data-base developed to include in a quite structured format most clinical data used for patient management in a hospital setting. The system was aimed at achieving a reasonable compromise between the significant but complex solutions the research offers and the real needs of medical practice. First of all, the paper defines the requirements for designing a computerized clinical database according to a patient-centered clinical approach. Then, it describes the structure of a prototype aimed at classifying clinical data as a hierachy and describing them according to a structural approach. Next, problems related to the management and upgrading of the system are identified and possible solutions described, with a particular emphasis or knowledge acquisition, refinement and specialization, and on problems related to the functional aspects required for clinical applications. Finally, some meaningful clinical applications are outlined, which use the computerized clinical database as the standard for knowledge organization and data sharing.

Database Management Systems↗

The role of diltiazem in treating hypertension and coronary artery disease: new approaches to preventing first events.

OBJECTIVE: To review the role of diltiazem in treating and preventing a group of cardiovascular diseases, including painful and silent cardiac ischemia, stroke, nonfatal myocardial infarction and sudden cardiac death, by modulating certain physiological causes that they appear to share. DATA SOURCES: A MEDLINE search was conducted for all clinical articles on the use of diltiazem for hypertension and coronary artery disease. When clinical data were not available, basic research findings were reviewed. DATA EXTRACTION AND SYNTHESIS: Because many cardiovascular events show a marked daily periodicity--which appears to coincide with circadian peaks in the ability of platelets to aggregate, sympathetic activity, coronary tone, blood pressure, heart rate and hematocrit, and a trough in fibrinolytic activity--the impact of diltizazem on these physiological changes was assessed. CONCLUSIONS: Diltiazem influences many of these events by increasing myocardial bloodflow, and reducing myocardial oxygen demand and cardiac workload. However, it differs from other calcium antagonists in its mild negative inotropic and moderate negative dromotropic effects, without apparent stimulation of cardiac performance or contractility. In addition, it inhibits platelet aggregation, decreases catecholamine release, diminishes coronary tone and blocks the vasoconstrictive actions of endothelin-1. This appears to translate into a beneficial effect on ischemia, thrombolysis, arrhythmias, infarct parameters, atherosclerosis and hypertension. Diltiazem has a relatively favourable safety and tolerability profile, and is available in a once-daily dosage form. The most common adverse effects are related to vasodilation (eg, edema and headache), and the most frequent serious adverse event is atrioventricular block, which occurs rarely. In summary, diltiazem appears to be well suited to preventing the first occurrence of cardiovascular events and may even have a role in preventing certain types of secondary events. The data accumulated so far indicate the need for a large scale random clinical trial addressing these outcomes.

Arrhythmias, Cardiac↗

Medical informatics--the state of the art in the Hospital Authority.

Since its inception in 1990, the Hospital Authority (HA) has strongly supported the development and implementation of information systems both to improve the delivery of care and to make better information available to managers. This paper summarizes the progress to date and discusses current and future developments. Following the first two phases of the HA information technology strategy the basic infrastructural elements were laid in place. These included the foundation administrative and financial systems and databases; establishment of a wide area network linking all hospitals and clinics together; laboratory, radiology and pharmacy systems with access to results in the ward. A major push into clinical systems began in 1994 with the clinical management system (CMS), which established a clinical workstation for use in both ward and ambulatory settings. The CMS is now running at all major hospitals, and provides single logon access to almost all the electronically collected clinical data in the HA. The next phase of development is focussed on further support for clinical activities in the CMS. Key elements include the longitudinal electronic patient record (ePR), clinical order entry, generic support for clinical reports, broadening the scope to include allied health and the rehabilitative phase, clinical decision support, an improved clinical documentation framework, sharing of clinical information with other health care providers and a comprehensive data repository for analysis and reporting purposes.

China↗

TERMTrial--terminology-based documentation systems for cooperative clinical trials.

Within cooperative groups of multi-center clinical trials a standardized documentation is a prerequisite for communication and sharing of data. Standardizing documentation systems means standardizing the underlying terminology. The management and consistent application of terminology systems is a difficult and fault-prone task, which should be supported by appropriate software tools. Today, documentation systems for clinical trials are often implemented as so-called Remote-Data-Entry-Systems (RDE-systems). Although there are many commercial systems, which support the development of RDE-systems there is none offering a comprehensive terminological support. Therefore, we developed the software system TERMTrial which consists of a component for the definition and management of terminology systems for cooperative groups of clinical trials and two components for the terminology-based automatic generation of trial databases and terminology-based interactive design of electronic case report forms (eCRFs). TERMTrial combines the advantages of remote data entry with a comprehensive terminological control.

Clinical Trials as Topic↗

Position and orientation in space of bones during movement: anatomical frame definition and determination.

This paper deals with methodological problems related to the reconstruction of the position and orientation of the human pelvis and the lower limb bones in space during the execution of locomotion and physical exercises using a stereophotogrammetric system. The intention is to produce a means of quantitative description of joint kinematics and dynamics for both research and application. Anatomical landmarks and bone-embedded anatomical reference systems are defined. A contribution is given to definition of variables and relevant terminology. The concept of anatomical landmark calibration is introduced and relevant experimental approaches presented. The problem of data sharing is also addressed. This material is submitted to the scientific community for consideration as a basis for standardization. RELEVANCE: In order to make movement analysis effective in the solution of clinical problems, a structured conceptual background is needed in addition to standardized definitions and methods. Technical solutions which make data sharing and relevant data banks possible are also of primary importance. This paper makes suggestions in this context.

Journal Article↗

Evaluation of a deidentification (De-Id) software engine to share pathology reports and clinical documents for research.

We evaluated a comprehensive deidentification engine at the University of Pittsburgh Medical Center (UPMC), Pittsburgh, PA, that uses a complex set of rules, dictionaries, pattern-matching algorithms, and the Unified Medical Language System to identify and replace identifying text in clinical reports while preserving medical information for sharing in research. In our initial data set of 967 surgical pathology reports, the software did not suppress outside (103), UPMC (47), and non-UPMC (56) accession numbers; dates (7); names (9) or initials (25) of case pathologists; or hospital or laboratory names (46). In 150 reports, some clinical information was suppressed inadvertently (overmarking). The engine retained eponymic patient names, eg, Barrett and Gleason. In the second evaluation (1,000 reports), the software did not suppress outside (90) or UPMC (6) accession numbers or names (4) or initials (2) of case pathologists. In the third evaluation, the software removed names of patients, hospitals (297/300), pathologists (297/300), transcriptionists, residents and physicians, dates of procedures, and accession numbers (298/300). By the end of the evaluation, the system was reliably and specifically removing safe-harbor identifiers and producing highly readable deidentified text without removing important clinical information. Collaboration between pathology domain experts and system developers and continuous quality assurance are needed to optimize ongoing deidentification processes.

Confidentiality↗

State of the evidence: current status and prospects of meta-analysis in infectious diseases.

Meta-analysis is increasingly applied in infectious diseases to summarize clinical data and to evaluate the strength, diversity, and deficiencies of evidence for medical questions of interest. We present an overview of the current status of meta-analysis in the area of infectious diseases and the lessons learnt from its applications. Recently published meta-analyses show that several important areas of research on infectious diseases lack sufficient randomized evidence. Often evidence is scattered across a large number of small trials, making meta-analysis a promising way to integrate diverse results. Quality of trials in the field is often poor. There are several examples where evidence was accumulated primarily for marketing rather than for scientific purposes. Finally, meta-analyses are also raising the problem of what constitutes clinically significant treatment benefits, as well as interesting issues about the reproducibility of clinical evidence and its evolving nature. The increasing applications of meta-analytic methods in the study of infectious diseases may enhance data sharing and international collaborations.

Anti-Bacterial Agents↗

A taxonomy of shared care for chronic disease.

BACKGROUND: Shared care is promoted as a way of integrating primary and secondary services and achieving one of the targets set for the NHS in the 1990s. We aimed to compose a taxonomy of shared care schemes for chronic disease in order to inform the development of develop shared care. METHODS: A two-phase postal questionnaire survey of Scotland and North West Thames Region, England. In the first phase we identified the number of shared care schemes for chronic disease, which were followed up in the second phase. RESULTS: Shared care schemes were classified into six groups, or models, according to their method of data transfer. These are: (I) community clinics, where the specialist undertakes a clinic in general practice; (II) basic, where communication comprises the regular exchange of letters or standardized record sheets; (III) liaison, where the hospital team and general practitioner (GP) meet to discuss and agree the management of patients under shared care; (IV) shared care record cards, where the exchange of information is made through a booklet or 'cooperation card', commonly carried by the patient; (V) computer-assisted shared care, where a circuit of information is established between GP and hospital specialist based on data collected at each patient visit and mediated through computer-generated summaries; (VI) electronic mail, where hospital specialist and GP both have access to the same data on patients shared between them. CONCLUSION: Despite substantial variation in the operation of shared care, schemes can be broadly classified and constructed in six different ways. In establishing this taxonomy, a choice is offered to health care workers wishing to develop shared care.

Chronic Disease↗