Search PubMed⌕ Search

SEARCH · Search PubMed

Results for “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 325 records · Page 18Linked to original sources

Problems in research integrity arising from misconceptions about the ownership of research.

Many allegations of scientific misconduct result from activities that are perceived by the complainants as the "theft" of ideas, experimental results, or other intellectual property. The authors' thesis is that many of these allegations originate in misconceptions about the ownership of publicly supported scientific research. Some universities and medical schools may have their own codes for authorship, and journals and professional societies have codes or guidelines. In the NIH intramural programs, research data are considered to be the property of the institutes, not the individual researchers. In contrast, the training and experience of most scientists lead them to consider research data as being theirs. The paper discusses the origins of this attitude toward data and the ways that the structures of university laboratories and training programs lead to confusion and misunderstandings of researchers' "rights" to data. Also, emotional and personality factors often complicate these issues and lead to confrontations. Other misconceptions widely held among researchers: the false concepts of "my grant" and the "co-principal" investigator, ideas about who is and is not qualified to be an author, and ideas about sharing data. The authors emphasize the importance of scientifically literate legal advisers and the necessity for graduate students, postdoctoral fellows, and professors to understand their institutions' and grantors' guidelines and their obligations as scientists. At the heart of these obligations at all levels of research is honesty.

Academic Medical Centers↗

A global network for the control of snail-borne disease using satellite surveillance and geographic information systems.

At a team residency sponsored by the Rockefeller Foundation in Bellagio, Italy, 10-14 April 2000 an organizational plan was conceived to create a global network of collaborating health workers and earth scientists dedicated to the development of computer-based models that can be used for improved control programs for schistosomiasis and other snail-borne diseases of medical and veterinary importance. The models will be assembled using GIS methods, global climate model data, sensor data from earth observing satellites, disease prevalence data, the distribution and abundance of snail hosts, and digital maps of key environmental factors that affect development and propagation of snail-borne disease agents. A work plan was developed for research collaboration and data sharing, recruitment of new contributing researchers, and means of access of other medical scientists and national control program managers to GIS models that may be used for more effective control of snail-borne disease. Agreement was reached on the use of compatible GIS formats, software, methods and data resources, including the definition of a 'minimum medical database' to enable seamless incorporation of results from each regional GIS project into a global model. The collaboration plan calls for linking a 'central resource group' at the World Health Organization, the Food and Agriculture Organization, Louisiana State University and the Danish Bilharziasis Laboratory with regional GIS networks to be initiated in Eastern Africa, Southern Africa, West Africa, Latin America and Southern Asia. An Internet site, www.gnosisGIS.org, (GIS Network On Snail-borne Infections with special reference to Schistosomiasis), has been initiated to allow interaction of team members as a 'virtual research group'. When completed, the site will point users to a toolbox of common resources resident on computers at member organizations, provide assistance on routine use of GIS health maps in selected national disease control programs and provide a forum for development of GIS models to predict the health impacts of water development projects and climate variation.

Animals↗

Information technology principles for management, reporting, and research.

Information technology holds the promise to enhance the ability of individuals and organizations to manage emergency departments, improve data sharing and reporting, and facilitate research. The Society for Academic Emergency Medicine (SAEM) Consensus Committee has identified nine principles to outline a path of optimal features and designs for current and future information technology systems. The principles roughly summarized include the following: utilize open database standards with clear data dictionaries, provide administrative access to necessary data, appoint and recognize individuals with emergency department informatics expertise, allow automated alert and proper identification for enrollment of cases into research, provide visual and statistical tools and training to analyze data, embed automated configurable alarm functionality for clinical and nonclinical systems, allow multiexport standard and format configurable reporting, strategically acquire mission-critical equipment that is networked and capable of automated feedback regarding functional status and location, and dedicate resources toward informatics research and development. The SAEM Consensus Committee concludes that the diligent application of these principles will enhance emergency department management, reporting, and research and ultimately improve the quality of delivered health care.

Emergency Medicine↗

Cost-effectiveness of pediatric heart transplantation.

BACKGROUND: Survival after pediatric heart transplantation has continued to improve. Nonetheless, graft survival is generally <15 years and the costs of transplantation and subsequent immunosuppression are substantial. In the present study, we sought to examine the cost-effectiveness of pediatric heart transplantation. METHODS: Data from 95 pediatric subjects undergoing transplantation at our institution from 1997 through 2004 were reviewed to determine the costs of pediatric heart transplantation. Costs included pre-transplant care, organ procurement, initial hospitalization and follow-up care. Life expectancy was derived from the United Network of Organ Sharing data set. Data were reported as cost per quality-adjusted life-years (QALYs) gained, which were discounted at 3%. Cost-effectiveness was stratified by primary transplantation vs re-transplantation. RESULTS: The mean cost of initial hospitalization and organ procurement was $221,897 per patient for primary transplant and $285,296 per patient for re-transplant. Annual follow-up costs were estimated to be $18,141 in the first year (excluding the first 90 days post-transplant) and $18,480 per year thereafter. Under base-case assumptions, costs per QALY gained were $49,679 for primary transplantation and $87,883 for re-transplantation. Sensitivity analysis yielded a cost-utility range of $44,943 to $57,628 per QALY gained for primary transplantation and $70,834 to $103,661 per QALY gained for re-transplantation. CONCLUSIONS: Costs of primary pediatric heart transplantation are within the accepted range of cost effectiveness. Pediatric heart re-transplantation has higher costs relative to benefits gained owing to shorter graft survival.

Adolescent↗

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↗

DNA fingerprinting reveals relationships between strains of Trypanosoma rangeli and Trypanosoma cruzi.

Very little is known about the structure and sequence of the genomic DNA and kDNA of T. rangeli and no highly polymorphic markers are known. In this paper, we show that the Jeffreys' multilocal probe 33.15 produces characteristic DNA fingerprints with these trypanosomes. The multiband patterns can be used to differentiate T. cruzi from T. rangeli and for recognizing relationships between strains of the latter from widely different geographic areas and different hosts. The topology of a UPGMA phenetic tree constructed from band-sharing data suggests the existence of two groups of T. rangeli: one encompassing parasites from Central America and the northern part of South America and another with the parasites from southern Brazil. This splitting was confirmed by the use of both nuclear and kinetoplast unique sequence probes. Among strains of T. rangeli, band sharing was generally negatively correlated with geographical distance. This work confirms the usefulness of DNA fingerprints as a potent technique for the analysis of relationships in trypanosomatid populations.

Animals↗

A systems overview of the Electronic Surveillance System for the Early Notification of Community-Based Epidemics (ESSENCE II).

The Electronic Surveillance System for the Early Notification of Community-Based Epidemics, or ESSENCE II, uses syndromic and nontraditional health information to provide very early warning of abnormal health conditions in the National Capital Area (NCA). ESSENCE II is being developed for the Department of Defense Global Emerging Infections System and is the only known system to combine both military and civilian health care information for daily outbreak surveillance. The National Capital Area has a complicated, multijurisdictional structure that makes data sharing and integrated regional surveillance challenging. However, the strong military presence in all jurisdictions facilitates the collection of health care information across the region. ESSENCE II integrates clinical and nonclinical human behavior indicators as a means of identifying the abnormality as close to the time of onset of symptoms as possible. Clinical data sets include emergency room syndromes, private practice billing codes grouped into syndromes, and veterinary syndromes. Nonclinical data include absenteeism, nurse hotline calls, prescription medications, and over-the-counter self-medications. Correctly using information marked by varying degrees of uncertainty is one of the more challenging aspects of this program. The data (without personal identifiers) are captured in an electronic format, encrypted, archived, and processed at a secure facility. Aggregated information is then provided to users on secure Web sites. When completed, the system will provide automated capture, archiving, processing, and notification of abnormalities to epidemiologists and analysts. Outbreak detection methods currently include temporal and spatial variations of odds ratios, autoregressive modeling, cumulative summation, matched filter, and scan statistics. Integration of nonuniform data is needed to increase sensitivity and thus enable the earliest notification possible. The performance of various detection techniques was compared using results obtained from the ESSENCE II system.

Bioterrorism↗

Management forecast: optimizing the use of organizational and individual knowledge.

Knowledge management provides a means for sharing data, lessons learned, and accumulated knowledge throughout an organization or within an entire industry. Gone are the days of hoarding knowledge to ensure job security; today's workers and managers must work together to find new and innovative ways to use what they know and optimize how that knowledge is accessed. Knowledge management's new approach to shared intellectual resources has implications for workers and managers in all fields and promises to redraw the management landscape. But are healthcare organizations setting the stage for reengineering themselves all over again?

Administrative Personnel↗

Lipoplasty claims experience of U.S. insurance companies.

An analysis of medical liability claims for lipoplasty (liposuction) from January of 1985 through June of 1998 compared the insurance industry experience of plastic surgeons with that of other physicians. The Data Sharing Project database of the Physician Insurers Association of America, a trade association of professional liability companies owned and operated by medical professionals that collectively insure approximately 60 percent of America's private practice physicians, was queried. Of the nearly 45,000 total entries in the database, 292 were claims for adverse events related to lipoplasty or liposuction. These raw data were stratified by physician specialty, severity of complication, practice location, patient gender, indemnity payment, and other insurance industry-relevant variables. To simplify interspecialty comparisons, we normalized the claims rate to incidents per 100 insured physicians. The indexed lipoplasty claims rate was 3.0 per 100 insured plastic surgeons and 4.1 for other surgeons; the indexed lipoplasty claims rate for nonsurgical specialists was 2.5 per 100 insured dermatologists and 2.3 for other nonsurgeons. The higher claims rate for surgeons most likely reflects the wider scope of full-service aesthetic surgery performed by surgical specialists. Nearly two-thirds of claims (65.4 percent) during the 13-year survey period were the result of hospital-based lipoplasty; 20.9 percent were office-based claims. The prevalence of hospital-based claims may be a consequence of both historical bias introduced by hospital-based specialty surgery in the early years and prudent patient safety considerations during performance of complex or prolonged procedures in more recent years.Two-thirds of the claims (67 percent) arose from informed-consent or breach-of-contract issues, far higher than the 26 percent aggregate claims norm. The mean indemnity payment was $94,534 per lipoplasty claim; claims paid against board-certified specialists averaged $83,350. Consistent with national lipoplasty demographics, 87 percent of claims were brought by women and 13 percent were brought by men. Seven fatalities (three women and four men) were noted; cause of death is not recorded in this type of database.

Data Collection↗

OmniExtract: an automatic data extraction tool based on large language model and prompt engineering.

Extracting structured information from documents or scientific papers is crucial for data sharing and retrieval. Recent advances in large language models (LLMs) have demonstrated strong capabilities in language understanding, and a number of LLM-based tools have been developed for extraction-oriented tasks. However, it's still difficult to find a universal and user-friendly tool for various practical extraction tasks. To address this challenge, we propose OmniExtract, an automatic data extraction tool with user-friendly configuration files that can adapt to various data extraction tasks. OmniExtract employs a prompt optimization method to refine task-specific prompts and achieve high extraction performance. It also supports comprehensive data extraction from both documents and tables, making it applicable to a broad range of data sources. Evaluation results show that OmniExtract obtains a high accuracy ~90% for three datasets. Furthermore, two additional data extraction applications of OmniExtract in real-world scenarios have been presented, achieving an accuracy of 92.21% and ~90% precision and recall, respectively. Specifically, OmniExtract can handle tabular files of various sizes and formats, and achieve over 99% precision and recall on table information extraction tasks. The data reliability performance shows that OmniExtract is a valuable tool for database updating. An online testing service is available at https://ngdc.cncb.ac.cn/omniextract/. The service can be deployed locally with the code in https://github.com/wyb39/OmniExtract.

Large Language Models↗

Improving patient safety through quality assurance.

CONTEXT: Anatomic pathology laboratories use several quality assurance tools to detect errors and to improve patient safety. OBJECTIVE: To review some of the anatomic pathology laboratory patient safety quality assurance practices. DESIGN: Different standards and measures in anatomic pathology quality assurance and patient safety were reviewed. MAIN OUTCOME MEASURES: Frequency of anatomic pathology laboratory error, variability in the use of specific quality assurance practices, and use of data for error reduction initiatives. RESULTS: Anatomic pathology error frequencies vary according to the detection method used. Based on secondary review, a College of American Pathologists Q-Probes study showed that the mean laboratory error frequency was 6.7%. A College of American Pathologists Q-Tracks study measuring frozen section discrepancy found that laboratories improved the longer they monitored and shared data. There is a lack of standardization across laboratories even for governmentally mandated quality assurance practices, such as cytologic-histologic correlation. The National Institutes of Health funded a consortium of laboratories to benchmark laboratory error frequencies, perform root cause analysis, and design error reduction initiatives, using quality assurance data. Based on the cytologic-histologic correlation process, these laboratories found an aggregate nongynecologic error frequency of 10.8%. Based on gynecologic error data, the laboratory at my institution used Toyota production system processes to lower gynecologic error frequencies and to improve Papanicolaou test metrics. CONCLUSION: Laboratory quality assurance practices have been used to track error rates, and laboratories are starting to use these data for error reduction initiatives.

Humans↗

Functional and control integration of an ICU, LIS and PACS information system.

The need for collaboration and data sharing among systems dedicated to individual functional areas and user groups has initiated major efforts towards the development of an integrated hospital information system. Major issues in the development of any integrated architecture that incorporates autonomous departmental systems include the development of commonly accepted interaction mechanisms, standardisation, the structure of the computerised patient record, its extensibility, as well as limitations multimedia data impose. This paper presents work done within project IHIS, a nationally funded project for the development of an integrated hospital information system that provides ICU staff with access to both the ICU assisting laboratory information system's data as well as radiological multimedia data.

Clinical Laboratory Information Systems↗

Radiology integration in a multi-hospital system.

In 1989, Salt Lake City's Intermountain Health Care (IHC) began a process to reduce costs and streamline processes. Divided into four geographic regions, IHC consists of 24 hospitals and 100 clinics, a 400-member practitioner-physician group, and a staff of 23,000. IHC determined that three Salt Lake Valley hospitals, part of its Urban Central Region, must become one entity with shared management and a reduced staff to cover operations at all three hospitals. Management of the three radiology departments were charged with creating an integration process for the three hospitals. Two directors were selected to manage radiology and meet the outlined goals. Difficulty arose when one director needed to make changes in a facility managed by the other. The directors found that structuring by modality allowed them to plan for all three facilities, standardize equipment purchases and create integrated rather than departmental programs. As consolidation was taking place in top management, employees worried what the resulting changes meant for their jobs. Many were unfamiliar with the concepts of team structure and continuous quality improvement. Various courses and meetings were held to educate staff members and bring them up to new standards. Most successful were the meetings that allowed staff from different facilities to come together and share ideas. Although travel was an issue, these meetings quickly helped move the integration processes forward as peer relationships were developed. Employees were recruited for cross-training and new staff worked wherever needed. As they began to share data, the three hospitals identified best-practice and internal benchmarks. IHC is now ready to hire a single director to manage the radiology departments at the three Salt Lake Valley hospitals.

Budgets↗

Building the national health information infrastructure for personal health, health care services, public health, and research.

BACKGROUND: Improving health in our nation requires strengthening four major domains of the health care system: personal health management, health care delivery, public health, and health-related research. Many avoidable shortcomings in the health sector that result in poor quality are due to inaccessible data, information, and knowledge. A national health information infrastructure (NHII) offers the connectivity and knowledge management essential to correct these shortcomings. Better health and a better health system are within our reach. DISCUSSION: A national health information infrastructure for the United States should address the needs of personal health management, health care delivery, public health, and research. It should also address relevant global dimensions (e.g., standards for sharing data and knowledge across national boundaries). The public and private sectors will need to collaborate to build a robust national health information infrastructure, essentially a 'paperless' health care system, for the United States. The federal government should assume leadership for assuring a national health information infrastructure as recommended by the National Committee on Vital and Health Statistics and the President's Information Technology Advisory Committee. Progress is needed in the areas of funding, incentives, standards, and continued refinement of a privacy (i.e., confidentiality and security) framework to facilitate personal identification for health purposes. Particular attention should be paid to NHII leadership and change management challenges. SUMMARY: A national health information infrastructure is a necessary step for improved health in the U.S. It will require a concerted, collaborative effort by both public and private sectors.

Confidentiality↗

Pathology as the enabler of human research.

Academic Pathology is a key player in human molecular science and in the powerful initiatives of the National Institutes of Health. Pathologists generate data crucial to virtually every molecular study of human tissue, and have the necessary skills and authority to oversee processing of human tissues for research analysis. We advocate that Academic Pathology is optimally positioned to drive the molecular revolution in study of human disease, through human tissue collection, analysis, and databasing. This can be achieved through playing a major role in human tissue procurement and management; establishing high-quality 'Pathology Resource Laboratories'; providing the scientific expertise for pathology data sharing; and recruiting and training physician scientists. Pathology should position itself to be the local institutional driver of technology implementation and development, by operating the resource laboratories, providing the expertise for technical and conceptual design of research projects, maintaining the databases that link molecular and morphological information on human tissues with the requisite clinical databases, providing education and mentorship of technology users, and nurturing new research through the development of preliminary data. We also consider that outstanding pathology journals are available for the publication of research emanating from such studies, to the benefit of the pathology profession as an academic enterprise. It is our earnest hope that Academic Pathology can play a leading role in the remarkable advances to be made as the 21st century unfolds.

Biomedical Research↗

Nursing constraint models for electronic health records: a vision for domain knowledge governance.

Various forms of electronic health records (EHRs) are currently being introduced in several countries. Nurses are primary stakeholders and need to ensure that their information and knowledge needs are being met by such systems information sharing between health care providers to enable them to improve the quality and efficiency of health care service delivery for all subjects of care. The latest international EHR standards have adopted the openEHR approach of two-level modelling. The first level is a stable information model determining structure, while the second level consists of constraint models or 'archetypes' that reflect the specifications or clinician rules for how clinical information needs to be represented to enable unambiguous data sharing. The current state of play in terms of international health informatics standards development activities is providing the nursing profession with a unique opportunity and challenge. Much work has been undertaken internationally in the area of nursing terminologies and evidence-based practice. This paper argues that to make the most of these emerging technologies and EHRs we must now concentrate on developing a process to identify, document, implement, manage and govern our nursing domain knowledge as well as contribute to the development of relevant international standards. It is argued that one comprehensive nursing terminology, such as the ICNP or SNOMED CT is simply too complex and too difficult to maintain. As the openEHR archetype approach does not rely heavily on big standardised terminologies, it offers more flexibility during standardisation of clinical concepts and it ensures open, future-proof electronic health records. We conclude that it is highly desirable for the nursing profession to adopt this openEHR approach as a means of documenting and governing the nursing profession's domain knowledge. It is essential for the nursing profession to develop its domain knowledge constraint models (archetypes) collaboratively in an international context.

Artificial Intelligence↗

Network information security in a phase III Integrated Academic Information Management System (IAIMS).

The developing Integrated Academic Information System (IAIMS) at Columbia-Presbyterian Medical Center provides data sharing links between two separate corporate entities, namely Columbia University Medical School and The Presbyterian Hospital, using a network-based architecture. Multiple database servers with heterogeneous user authentication protocols are linked to this network. "One-stop information shopping" implies one log-on procedure per session, not separate log-on and log-off procedures for each server or application used during a session. These circumstances provide challenges at the policy and technical levels to data security at the network level and insuring smooth information access for end users of these network-based services. Five activities being conducted as part of our security project are described: (1) policy development; (2) an authentication server for the network; (3) Kerberos as a tool for providing mutual authentication, encryption, and time stamping of authentication messages; (4) a prototype interface using Kerberos services to authenticate users accessing a network database server; and (5) a Kerberized electronic signature.

Computer Communication Networks↗

Photo archiving, cephalometric analyses, and information sharing on the Internet.

The method we use to collect, store, and share dental records of our patients is rapidly becoming digital. Many programs have been designed to run on a single computer or local network to handle various tasks, including cephalometric analysis and orthodontic treatment planning. Selecting a system can be complex, requiring consideration of capital investment costs and subscription or update fees, as well as the ease (or difficulty) of installing the system and learning to use it. cephX (cephX, Inc, Las Vegas, Nev) is an Internet-based digital data storage and retrieval service for cephalometric analyses, photographic storage, and online data sharing. Users pay for services as they are used, eliminating the need to buy new hardware or software.

Cephalometry↗