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PubMed2000

Design and evolution of the data management systems in the Prostate, Lung, Colorectal and Ovarian (PLCO) Cancer Screening Trial.

This paper describes the design and evolution of the data management systems developed in support of the Prostate, Lung, Colorectal and Ovarian Cancer Screening Trial. These systems span platforms from stand-alone computers to distributed systems on local area networks to mainframes. Allowing all of these systems to share appropriate information electronically introduces integration, synchronization, testing, and support challenges. For each platform, applications were developed to handle data entry, editing, trial management, reporting, telecommunications, and data sharing. Approaches to issues such as level of data access, integration with other, existing applications, and handling the expansion of the protocol are discussed.

Colorectal Neoplasms↗
PubMed1998

Comprehensive health data systems spanning the public-private divide: the Massachusetts experience.

As systems of health care delivery have evolved from claims-based fee-for-service to capitated or managed care, with its emphasis on cost-effectiveness, quality, and performance measurement, some states have begun to experiment with new ways to collect, organize, and share health information. In many cases, the drivers of these changes have been purchasers of health care, including large and small private employers and public agencies such as Medicaid. One of the results of these changes is the increased interest in the sharing of health information, between health plans and employers, and, in some instances, between private plans and public agencies such as public health. Massachusetts, which has one of the highest rates of managed care penetration in the United States, has brought together the various parties involved in the collection and utilization of health information, to craft agreements on standards and protocols that will allow the sharing of health data. While much of the activity involves business transactions between private sector health plans, the Department of Medical Assistance (Medicaid) has joined with its private sector purchasing partners in demanding cost-effective, high-quality care; it is these demands that have helped stimulate the need to reorganize previously proprietary health information systems. The activities of two public-private coalitions, the Massachusetts Healthcare Purchaser Group and the Massachusetts Health Data Consortium, have been critical in initiating and supporting the complex processes that have led to significant changes in state-based systems of health information.

Health Maintenance Organizations↗
PubMed2004

Property rights in genetic information.

The primary theme of this paper is the normative case against ownership of one's genetic information along with the source of that information (usually human tissues samples). The argument presented here against such "upstream" property rights is based primarily on utilitarian grounds. This issue has new salience thanks to the Human Genome Project and "bio-prospecting" initiatives based on the aggregation of genetic information, such as the one being managed by deCODE Genetics in Iceland. The rationale for ownership is twofold: ownership will protect the basic human rights of privacy and autonomy and it will enable the data subjects to share in the tangible benefits of the genetic research. Proponents of this viewpoint often cite the principle of genetic exceptionalism, which asserts that genetic information needs a higher level of protection than other kinds of personal information such as financial data. We argue, however, that the recognition of such ownership rights would lead to inefficiency along with the disutility of genetic discoveries. Biomedical research will be hampered if property rights in genes and genetic material are too extensive. We contend that other mechanisms such as informed consent and strict confidentiality rules can accomplish the same result as a property right without the liabilities of an exclusive entitlement.

Access to Information↗
PubMed2004

Do pregnancy complications and CVD share common antecedents?

Considerable data link low birth weight, due to intrauterine growth restriction, to increased offspring risk of vascular disease in later adult life. This is considered to be the result, in part, of programming through fetal nutrition. These data support the hypothesis that pregnancy outcome in terms of birth weight is linked to the infant's subsequent health. In contrast, much less attention has been focused on the relationship between adverse pregnancy outcomes, such as pre-eclampsia, gestational diabetes, pre-term delivery and intrauterine growth restriction, and the mother's subsequent health. Interesting data have accumulated linking the maternal vascular, metabolic and inflammatory complications of pregnancy to an increased risk of vascular disease in later life (Table 1). This paper reviews the emerging evidence to support this fascinating concept, addresses potential mechanisms and discusses potential clinical implications.

Cardiovascular Diseases↗
PubMed2005

Cardiac retransplantation in childhood: analysis of data from the United Network for Organ Sharing.

OBJECTIVE: For children in whom graft failure develops after cardiac transplantation, retransplantation is often considered. Although some centers have reported equivalent results for retransplantation as for primary transplantation, this strategy remains controversial. We sought to examine outcomes after retransplantation in children and to identify risk factors for mortality. METHODS: United Network for Organ Sharing records of heart transplantation for subjects younger than 18 years from 1987 to 2004 were reviewed. Indications for retransplantation and patient characteristics were evaluated. Analysis was performed with proportional hazards regression, controlling for other potential risk factors. RESULTS: Among the 4227 pediatric heart transplants, there were 219 retransplants. The most common indication for retransplantation was coronary allograft vasculopathy (51%). The mean interval from initial heart transplant to retransplantation was 4.7 +/- 3.8 years. Forty-two retransplants (19%) were performed within 180 days of primary transplantation. Survivals at 1, 5, and 10 years after retransplantation were 79%, 53%, and 44%, respectively. In multivariate analysis, retransplantation was associated with significantly higher mortality than primary transplantation (odds ratio 1.67, 95% confidence interval 1.32-2.12, P < .001). Patients who underwent retransplantation within 180 days of primary transplantation had a significantly lower 1-year survival than did other retransplant recipients (53% vs 86%, respectively, P < .02). Subjects who required mechanical ventilation before retransplantation also had poorer survival (P < .03). CONCLUSION: Survival after cardiac retransplantation in children is inferior to that after primary transplantation. Although results are acceptable, the impact of retransplantation on the availability of donor hearts requires further consideration.

Adolescent↗
PubMed2004

Testing for common structures in a panel of threshold models.

We consider the problem of examining the extent of (partial) similarity in the dynamics of a panel of independent threshold autoregressive processes. We develop some tests for common structure via Wald's approach and by checking whether the parameter estimates of the unconstrained threshold models satisfy the constraints defining the common structure. One test concerns the equality of independent ratios of normal means, which is shown to have nonstandard asymptotic null distribution. These tests are illustrated with a modern panel of Canadian lynx data; our analysis suggests that the lynx data over Canada share similar dynamics in the decrease phase, but they appear to be different in the increase phase.

Animals↗
PubMed2005

Ontologies supporting continuity of care: the case of heart failure.

Heart failure can be the final stage of almost any type of cardiovascular diseases. Such diseases are the leading cause of recurrent hospital stay and mortality in developed countries, and an increasingly important cause of morbidity and mortality in developing countries. In consideration of the growing incidence of this syndrome, the Province of Trento (Northern Italy) supports a research project called e-Heart Failure. The aims of this project include the implementation of a web-based patient record management system which must allow all the professionals involved in the care process to provide a shared and continuous care. This paper emphasizes the role of ontologies in supporting the continuity of care. In a complex scenario where multiple agents co-operate in order to allow continuity of care, ontologies are the essential glue to ensure semantic consistency to data and knowledge shared by the different actors involved in the process, including patients and their families.

Continuity of Patient Care↗
PubMed1998

Integration and communication for the continuity of cardiac care (I4C).

The project I4C (Integration and Communication for the Continuity of Cardiac Care) is carried out for the advancement of cardiac care, from prevention to follow-up. The goals of I4C are: (1) integrated access to patient data, wherever they are stored; (2) support of evidence-based care; (3) consistent recording of patient data (eg, patient history, electrocardiograms IECGs] or cine-angios) in a multimedia patient record; and (4) a documented reference data set for research. In several clinics, workstations are being installed to serve the four goals. Integration with other information systems in clinical care is realized by encapsulation. A computer-based patient record (ORCA) has been developed to support the collection, consultation, and sharing of patient data. In I4C, ORCA is intended for use in a research setting as well as routine patient care. The functionality of ORCA covers the collection of patient history data in a highly structured manner, the recording of drug prescriptions, an overview of laboratory test results, and viewers for ECGs and angiographic images. At present, structured data entry and consultation is supported in six European languages.

Cardiac Care Facilities↗
PubMed1982

Shared idiotypes among monoclonal antibodies specific for different immunodominant sugars of lipopolysaccharide of different Gram-negative bacteria.

Shared idiotypes (Ids) were identified on monoclonal antibodies specific for different immunodominant sugars in the lipopolysaccharide (LPS) of Gram-negative bacteria. The first group of monoclonal antibodies is specific for Escherichia coli 0113 LPS, whereas the second group is specific for Salmonella tranaroa LPS. The shared idiotopes borne by these two groups of monoclonal antibodies were identified with monoclonal anti-Id antibodies specific for E. coli LPS-binding monoclonal antibodies and with syngeneic anti-384Id antibodies specific for MOPC 384 and MOPC 870 myeloma proteins. Our data suggest that shared idiotopes are common for antibodies for an antigenic family.

Antibodies, Monoclonal↗
PubMed2005

Context enrichment of health risk surveillance data for use and application: conceptual considerations from an Australian perspective.

Increasing the relevance of health surveillance data for use and application remains a critical issue among users and stakeholders. However methods for displaying and communicating health risk data could do more to enrich these data for use and application. There is too much focus on developers, users and stakeholders and not enough focus on pathway models of disease and health. A greater focus on pathway models would help detail a wider explanation of the health problems across sectors and encourage better acceptance of responsibility for their occurrence within other sectors. Contextual enrichment of health data would encourage a shared theory among these players that would permit greater use and application. Better use of data and its translation into information and increased policy traction are likely to be achieved through processes that effectively: (1) establish a shared theoretical base for risk behaviour surveillance; (2) deliver data about the health and developmental status of individuals living in contexts over time; (3) maintain a systems approach to monitoring and surveillance that builds capacity for development, ownership, access to and dissemination of the data outside of the health system and (4) achieve sustainable partnerships that produce more intersectoral engagement.

Adult↗
PubMed2002

Academic profiling of tobacco-related performance measures in primary care.

Academic detailing and data feedback are two methods that have been used to change provider behavior. Academic profiling is proposed as an intervention that combines provider educational outreach and peer-comparison feedback of data generated from chart reviews and health plans. This project assessed the feasibility of academic profiling, using baseline measures to assess provider performance in identifying and treating patients who smoke. The pilot study was undertaken with four primary care practices in Maine. Two health plans shared administrative claims data on adult patients of participating providers. Two educational sessions were conducted: one including feedback of tobacco-related chart documentation and claims for nicotine replacement and bupropion (Zyban), and the other, coding for tobacco use (ICD-9 305.1) in adults enrolled in two health plans during 1998. A mailed survey assessed provider attitudes following the intervention. Among 24 providers, 80% attended the first session and 70% attended the second session. Provider documentation of tobacco status in the medical records varied from 68% to 100%. The frequency of tobacco pharmacotherapy claims for adult health plan enrollees having a provider visit in 1998 varied from 0% to 4.6% (mean 1.5%) by provider. The frequency of tobacco use diagnosis claims (ICD-9 305.1) varied from 0% to 19.8% by provider. More than 90% of the providers who reviewed the profiling graphs found the data were understandable, and 66% reported that the sessions helped them improve the ways they interact with patients who smoke. Practices vary in tobacco-related documentation, the prescribing of tobacco pharmacotherapy, and the coding for tobacco use. Providers are willing to participate in educational outreach using peer-comparison feedback, presenting opportunities to improve performance in the treatment of tobacco dependence.

Adult↗
PubMed1998

The role of the WHO programme on International Drug Monitoring in coordinating worldwide drug safety efforts.

The rationale for setting up the WHO International Programme for Adverse Reaction Monitoring, 30 years ago was to make it possible to identify rare adverse drug reactions (ADRs) that could not be found through clinical trial programmes. It became evident that maintaining an international database of ADR case reports and a network of institutions and scientists concerned with drug safety issues provides great additional gains when compared with operating in isolation. Thus, the scope of the WHO programme has expanded over time to accommodate the expansion of the field of drug safety monitoring, now often named pharmacovigilance. The international centre, the WHO Collaborating Centre for International Drug Monitoring in Uppsala [now known as the Uppsala Monitoring Centre (UMC)], maintains the international database and serves the national centres associated with the WHO programme; however, the role of the centre is expanding allowing it to play a leading role in global drug safety monitoring. The national centres are appointed by the governments of each of the countries participating in the WHO programme. These centres are responsible for collecting spontaneous ADR reports originating from health professionals, 49 countries are currently contributing case information and are full members of the programme; an additional 11 countries have applied for membership but have still not submitted any reports. The annual influx of reports is currently fluctuating at around 150,000 reports. In its development, the data collected by the WHO programme was guarded by strong rules of confidentiality. In some member countries, however, case data, with the important exception of reporter and patient identities, has always been public information. The UMC has made it a priority to try to create an atmosphere of openness and trust between all parties involved in drug safety assessment, which will eventually enable general sharing of available data and an extended analysis and use of the data collected. The WHO network represents the wealth of competence and experience that is at the disposal of countries wishing to join the international pharmacovigilance community.

Adverse Drug Reaction Reporting Systems↗
PubMed2003

Sharing prescription medication among teenage girls: potential danger to unplanned/undiagnosed pregnancies.

OBJECTIVE: The objective of this study was to determine how often children and adolescents share prescription medications and, because of teratogenic concerns, assess specific reasons why girls might engage in medication-sharing behaviors. METHODS: Data were collected as part of Youthstyles, a mail survey of children and adolescents 9 through 18 years of age (764 girls and 804 boys) about health issues, attitudinal variables, and media preferences. Information collected by the survey included the respondent's history of borrowing or sharing prescription medications, the frequency with which sharing occurred, the reasons why medications might be borrowed or shared, and who influences their decisions to borrow or share medication. RESULTS: A total of 20.1% of girls and 13.4% of boys reported ever borrowing or sharing medications. Of the girls surveyed, 15.7% reported borrowing prescription medications from others, and 14.5% reported sharing their prescription medication with someone else. The reported likelihood of sharing increased with age. Medication sharing or borrowing was not a "one time only" emergency use for many: 7.3% of girls 15 through 18 years of age had shared medications >3 times. Reasons that girls gave for why they would share medications included having a prescription for the same medicine (40.2%), getting the medication from a family member (33.4%), having the same problem as the person who had the medication (29%), or wanting something strong for pimples or oily skin (10.5%). CONCLUSIONS: Medication sharing is relatively common among children and adolescents and is more common among girls than boys. An adolescent who receives a medication via sharing does not receive the appropriate information about its actions and possible negative interactions with other medications or any other associated risks. Sharing potentially teratogenic drugs is of special concern. Many barriers exist to communicating the risk about teratogenic drugs to women and girls, particularly if they are not planning a pregnancy or are unaware that they are already pregnant. These findings suggest the need for basic research on issues related to the dangers of medication sharing and teratogenic risks, as well as the development of successful approaches to communicate these risks.

Adolescent↗
PubMed2005

SITRANS: a Web Information System for Microarray Experiments.

Microarray experiments aim at analyzing expression levels of genes using DNA probes. The amount of data managed for each experiment is very large. It is thus essential to provide electronic support for the capture and the management of information describing microarray experiments. We present here the SITRANS Web information system, the aim of which is to help research workers storing, browsing, sharing and publishing data.

Database Management Systems↗
PubMed2001

Haplotype sharing tests of linkage disequilibrium in a Hutterite asthma data set.

The Genetic Analysis Workshop 12 genome scan data set for "strict" asthma in a Hutterite population was analyzed using haplotype sharing analysis (HSA), which tests for differences in mean length of haplotype sharing around each marker for pairs of chromosomes in cases versus controls. The regions of chromosome 1 and 8 where evidence for linkage was observed in published analyses were negative by HSA. HSA yielded positive results on chromosomes 7, 12, 16, 18, and 21 (p = 0.003 on 21q). Although there are reports of support for linkage to asthma in some of these regions, it is not known whether any represent true positives. Further study is needed of the possible role of length-based measures of linkage disequilibrium in recent population isolates.

Adult↗
PubMed1994

Environmental and genetic influences on alcohol use in a volunteer sample of older twins.

A growing literature supports genetic contributions to familial resemblance for alcohol use characteristics, but few studies have focused on the mechanisms underlying alcohol use among older persons. We report patterns of alcohol use in a U.S. volunteer sample of 3,049 female and 1,070 male twins aged 50 to 96. Significant gender and age effects were found for self-report measures of current and lifetime alcohol use, with greater intake among males and current and lifetime abstinence more common among older participants. Comparisons with data obtained 4 years previously revealed high stability for quantity and frequency of alcohol consumption. Twin pairs with more frequent social contact tended to be more similar for lifetime and current alcohol use. Biometrical genetic modeling results indicate that use of alcohol is highly familial, with both genetic and shared environmental factors contributing to initiation of alcohol use among men and women. Among drinkers, however, the degree of twin resemblance for consumption behaviors is low to moderate and appears to be regulated by shared genes rather than shared environments. These data are consistent with a multidimensional process, suggesting that the determinants of whether one drinks in older age differ from those underlying how much or how often alcohol is consumed.

Aged↗