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Results for “data sharing”

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PubMed2003

Web-based data and knowledge sharing between stroke units and general practitioners.

We describe a telemedicine application for emergency management in Stroke Units, where prompt decisions must be taken, often knowing neither the clinical history nor the stroke symptoms onset modality. We have designed and implemented an Information and Communication Technology architecture for the situation in which a general practitioner is called for a suspected stroke and provides for the admission to a Stroke Unit. By means of a palmtop and a wireless Internet connection, he can send to the Stroke Unit the demographic data, the list of the patient's problems, current and/or recent therapies, and a guideline-based stroke-specific form with the objective examination results. In this way, the Stroke Unit team is alerted and informed before the patient arrival, and can manage the urgency at the best. The proposal involved 20 general practitioners and one Stroke Unit in the Lombardia Region, Italy.

Computer Systems↗
PubMed2001

The Functional Magnetic Resonance Imaging Data Center (fMRIDC): the challenges and rewards of large-scale databasing of neuroimaging studies.

The Functional Magnetic Resonance Imaging Data Center (fMRIDC) (http://www.fmridc.org) was established in the Autumn of 1999 with the objective of creating a mechanism by which members of the neuroscientific community may more easily share functional neuroimaging data. Examples in other sciences offer proof of the usefulness and benefit that sharing data provides through encouraging growth and development in those fields. By building a publicly accessible repository of raw data from peer-reviewed studies, the Data Center hopes to create a similarly successful environment for the neurosciences. In this article, we discuss the continuum of data-sharing efforts and provide an overview of the scientific and practical difficulties inherent in managing various fMRI data-sharing approaches. Next, we detail the organization, design and foundation of the fMRIDC, ranging from its current capabilities to the issues involved in the submitting and requesting of data. We discuss how a publicly accessible database enables other fields to develop relevant tools that can aid in the growth of understanding of cognitive processes. Information retrieval and meta-analytic techniques can be used to search, sort and categorize study information with a view towards subjecting study data to secondary 'meta-' and 'mega-analyses'. In addition, we detail the technical and policy challenges that have had to be addressed in the formation of the Data Center. Among others, these include: human subject confidentiality issues; ensuring investigator's rights; heterogeneous data description and organization; development of search tools; and data transfer issues. We conclude with comments concerning the future of the fMRIDC effort, its role in promoting the sharing of neuroscientific data, and how this may alter the manner in which studies are published.

Brain↗
PubMed2005

Improvement in neonatal intensive care in Northern Ireland through sharing of audit data.

PROBLEM: Ten percent of infants born will require admission to a neonatal facility. Coordinated activity to monitor and improve the quality of care for this high risk, high cost group of infants is considered a high priority. At the time of initiation of this project no system for collection and analysis of neonatal data existed in Northern Ireland. DESIGN: In 1994 an ongoing prospective centralised data collection system was implemented to facilitate quality improvement and research in neonatal care. We aim to ascertain if there has been a demonstrable improvement in the quality of care provided since the initiation of this system. SETTING: All nine Northern Ireland neonatal intensive care units returned prospectively collected socioeconomic, obstetric and neonatal episode data. KEY MEASURES FOR IMPROVEMENT: Achievement of the agreed quality indicators relating to transfer patterns, thermoregulation, antenatal steroid administration, and timing of administration of surfactant during the period 1 April 1999 to 31 March 2000 were compared with data for the period 1 April 1994 to 31 March 1996. STRATEGIES FOR CHANGE: Monitoring included audit and annual feedback of timely clear and relevant data where results were provided confidentially as standardised reports, together with anonymised comparisons with other similar sized units. Draft recommendations were made at regional level and units were asked to adopt finalized consensus guidelines at the local level and to implement changes to clinical practice. EFFECTS OF CHANGE: The proportion of transfers taking place in utero increased from 26% to 42% and antenatal steroid administration from 68% to 82%. Normothermia on first admission improved from 66% to 71% for inborn infants. The proportion of infants receiving surfactant where the first dose was given within an hour of birth increased from 13% to 66%. LESSONS LEARNT: A multi-professional regional care network can facilitate the development of agreed standards and a culture of regular evaluation leading to quality improvement.

Body Temperature Regulation↗
PubMed1989

Further data against HLA sharing in couples with recurrent spontaneous abortion.

Class I human leucocyte antigens (HLA-A, -B) and class II (HLA-DR) antigens were determined in 57 couples with primary recurrent abortions of unknown origin and in 57 normal fertile couples. No difference between abortion and control fertile couples was observed regarding HLA sharing. Analysis of 10 series in the literature, including our own results, is against the concept that compatibility in determinants of the major histocompatibility complex has a major role in recurrent spontaneous abortion (RSA).

Abortion, Habitual↗
PubMed2005

Developing a relational XML schema for sharing HIV clinical data.

Access to multi-site clinical data regarding treatment and outcomes of HIV-infected patients in routine care is required to support clinical research to improve the treatment of HIV. As part of the NIAID-funded CFAR Network of Integrated Clinical Systems (CNICS), we have developed a relational XML Schema to extend the existing observational research repository and to integrate real-time clinical information from electronic medical records (EMRs) at six Centers for AIDS Research (CFAR) into the repository. The schema will aid the expansion of the research repository beyond the initial sites, and the development process may facilitate the use of multi-site repositories to study other chronic diseases.

Databases as Topic↗
PubMed2006

Data withholding in genetics and the other life sciences: prevalences and predictors.

PURPOSE: To better understand the variety and prevalence of data withholding in genetics and the other life sciences and to explore factors associated with these behaviors. METHOD: In 2000, a sample of 2,893 geneticists and other life scientists (OLS) at the 100 most research-intensive universities in the United States were surveyed concerning data withholding and sharing. The instrument was developed and pretested in 1999. The two primary outcome measures were withholding in verbal exchanges with colleagues about unpublished research (verbal withholding) and withholding as part of the publishing process (publishing withholding). The independent variables related to the personal characteristics, research characteristics of faculty, and previous experience with data withholding. RESULTS: A total of 1,849 faculty responded (64%): 1,240 geneticists and 600 OLS. Forty-four percent of geneticists and 32% of OLS reported participating in any one of 13 forms of data withholding in the three previous years. Publishing withholding (geneticists 35%, OLS 25%) was more frequent than verbal withholding (geneticists 23%, OLS 12%). In multivariate analyses, male gender, participation in relationships with industry, mentors' discouraging data sharing, receipt of formal instruction in data sharing, and negative past experience with sharing were significantly associated with either verbal or publishing withholding among either geneticists or OLS. CONCLUSIONS: Data withholding is common in biomedical science, takes multiple forms, is influenced by a variety of characteristics of investigators and their training, and varies by field of science. Encouraging openness during the formative experiences of young investigators may be critical to increased data sharing, but the effects of formal training do not appear straightforward.

Access to Information↗
PubMed1984

Shared parenting: an empirical analysis utilizing a large data base.

The shared parenting literature is replete with rhetoric and relatively bereft of empirical data. In an effort to redress the balance, this study presents the preliminary results of the questionnaire responses of 201 parents involved in a shared parenting arrangement. The findings are presented in six substantive areas. Discussion of these results stresses the viability of shared parenting as a custody option and the need to differentiate carefully between those for whom shared parenting is an appropriate custody option and those for whom it is contraindicated.

Adolescent↗
PubMed2006

Sharing electronic health records: the patient view.

The introduction of a national electronic health record system to the National Health Service (NHS) has raised concerns about issues of data accuracy, security and confidentiality. The primary aim of this project was to identify the extent to which primary care patients will allow their local electronic record data to be shared on a national database. The secondary aim was to identify the extent of inaccuracies in the existing primary care records, which will be used to populate the new national Spine. Fifty consecutive attenders to one general practitioner were given a paper printout of their full primary care electronic health record. Participants were asked to highlight information which they would not want to be shared on the national electronic database of records, and information which they considered to be incorrect. There was a 62% response rate (31/50). Five of the 31 patients (16%) identified information that they would not want to be shared on the national record system. The items they identified related almost entirely to matters of pregnancy, contraception, sexual health and mental health. Ten respondents (32%) identified incorrect information in their records (some of these turned out to be correct on further investigation). The findings in relation to data sharing fit with the commonly held assumption that matters related to sensitive or embarrassing issues, which may affect how the patient will be treated by other individuals or institutions, are most likely to be censored by patients. Previous work on this has tended to ask hypothetical questions concerning data sharing rather than examine a real situation. A larger study of representative samples of patients in both primary and secondary care settings is needed to further investigate issues of data sharing and consent.

Adult↗
PubMed2004

An evaluation of the current state of genomic data privacy protection technology and a roadmap for the future.

The incorporation of genomic data into personal medical records poses many challenges to patient privacy. In response, various systems for preserving patient privacy in shared genomic data have been developed and deployed. Although these systems de-identify the data by removing explicit identifiers (e.g., name, address, or Social Security number) and incorporate sound security design principles, they suffer from a lack of formal modeling of inferences learnable from shared data. This report evaluates the extent to which current protection systems are capable of withstanding a range of re-identification methods, including genotype-phenotype inferences, location-visit patterns, family structures, and dictionary attacks. For a comparative re-identification analysis, the systems are mapped to a common formalism. Although there is variation in susceptibility, each system is deficient in its protection capacity. The author discovers patterns of protection failure and discusses several of the reasons why these systems are susceptible. The analyses and discussion within provide guideposts for the development of next-generation protection methods amenable to formal proofs.

Computer Security↗
PubMed2006

Making the grade with pay for performance: 7 lessons from best-performing hospitals.

Top-performing hospitals in pay-for-performance initiatives: Engage clinicians in quality improvement initiatives from the start of the planning process. Make high-quality care the priority of the executive team. Have a dedicated quality, safety, and performance improvement department. Manage data collection effectively. Regularly share performance data with their staffs. Commit to sharing best practices. Celebrate the achievements of their healthcare teams.

Financial Management, Hospital↗