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PubMedDate not supplied

Immunization information systems national research and evaluation agenda.

Immunization Information Systems (IIS) are operational in most states and are useful in programmatic and clinical assessments. To ensure that IIS reach their technical and usability potential, and to promote their use, we conducted a Delphi survey to develop a national IIS research and evaluation agenda. Experts with a wide range of IIS knowledge were asked to generate research and evaluation topics that document their utility in achieving and sustaining clinical and public health goals. Topics were then collated by the authors into 13 main categories and were ranked by the survey experts in order of importance. Provider perspectives and needs was ranked as the top research priority. Both data quality and technical data exchange also ranked high, as well as increasing provider participation and IIS cost and cost savings. Lower-ranked research priorities included data sharing between states and factors affecting IIS population-based measurements. Development of an IIS research and evaluation agenda allows policy makers to ensure that their decisions coincide with expert views on national priorities and enables researchers to conduct studies addressing topics recognized as nationally important. It also allows for targeted funding decisions.

Delphi Technique↗

PubMed2005

The global pertussis initiative: process overview.

In 2001, the Global Pertussis Initiative was established as a scientific forum to analyze the status of pertussis globally and to evaluate various immunization strategies to improve disease control. Thirty-seven multidisciplinary experts from 17 countries participated. The initiative was conducted in 3 stages: assessment of the international epidemiology, diagnosis, health and economic burden, and prevention and treatment of pertussis; evaluation and prioritization of 7 immunization strategies to address the problems; and identification of solutions to surmount potential barriers to the implementation of these strategies. A health-economic model, created for the Initiative, analyzed the cost-effectiveness of the selected immunization strategies. Discussion, debate, and consensus were facilitated via a roundtable meeting, teleconferences and use of a closed, interactive website, allowing the participants to share data, knowledge, experience, and opinion. This article describes the processes undertaken to conduct the Initiative.

Communicable Disease Control↗

PubMed1983

The affected sib method. II. The intermediate model.

An iteration procedure is outlined which uses HLA haplotype sharing data from sib pairs in which both sibs have the disease of interest. The procedure allows estimation of the degree of dominance of the HLA linked 'disease' allele, and its frequency in the population, for intermediate models where it is assumed that individuals who do not have at least one copy of the 'disease' allele do not contract the disease. Parameter estimates from sib-pair data on multiple sclerosis, insulin dependent diabetes mellitus, haemochromatosis, coeliac disease juvenile rheumatoid arthritis, and Graves' and Hashimoto's diseases are given.

Alleles↗

PubMedDate not supplied

Economic Commission for Europe inventory of transboundary ground water in Europe.

In Europe, a long history of cooperation over transboundary rivers--most notably the Rhine and Danube rivers--exists. To help foster cooperation and communication vis-à-vis transboundary ground water, the United Nations Economic Commission for Europe (UNECE), as part of its ground water program, conducted a survey on transboundary aquifers in Europe. The survey produced 25 responses from 37 countries and identified 89 transboundary aquifers. Respondents reported on the degree of ground water use within their own boundaries, transboundary aspects (agreements, joint commissions, etc.) of ground water, and transboundary aquifers themselves. The inventory proved useful, but a number of problems were identified: different map scales and symbols, difficulty in identifying transboundary aquifers, inconsistent labeling of aquifers, and data discrepancies. The UNECE ground water program also drafted guidelines for monitoring and assessment of transboundary ground water. These guidelines are not legally binding but have been adopted by 25 countries, deal mainly with monitoring and assessment, and are being implemented through a number of pilot projects. Other organizations-the United Nations Scientific, Educational and Cultural Organization, the Food and Agriculture Organization, the International Association of Hydrogeologists, and the European Union--are all supporting the investigation of transboundary aquifers in an effort to facilitate data sharing and coordinated management of these valuable resources.

Conservation of Natural Resources↗

PubMed2006

Urban-rural differences in the availability of hospital information technology applications: a survey of Georgia hospitals.

CONTEXT: Information technology (IT) has been identified as a potential tool for improving the safety of health care delivery. PURPOSE: To determine if there are significant differences between urban and rural community hospitals in the availability of selected IT functional applications and technological devices. METHODS: A mailed survey of community hospitals in Georgia assessing the current availability of IT applications (54.6% response rate). FINDINGS: Georgia hospitals reported having 63.6% of 56 possible functional applications computerized but only 52.9% of 41 technological devices. Compared to rural hospitals, urban hospitals had significantly more functional applications computerized (38.0 vs 31.8, P = .031) and technological devices available (23.9 vs 18.2, P = .016). Urban hospitals had significantly (P < .05) more IT applications available in 4 areas: emergency room services (7 of 10), surgical/operating room (8 of 12), laboratory (7 of 12), and radiology (5 of 11). Overall, the availability of IT applications was bimodal in rural hospitals: over 40% of rural hospitals had adopted over 70% of all applications, while approximately 26% of rural hospitals had adopted less than 30%. CONCLUSIONS: Some of the observed urban/rural differences in availability of IT applications may be due to differences in the scope of services provided by rural hospitals, in particular laboratories, radiology departments, emergency rooms, and surgery/operating rooms. Nevertheless, the bimodal distribution of IT applications adopted in rural hospitals raises concerns about the ability of selected rural hospitals to take advantage of regional data-sharing initiatives and maintain quality of patient care in the future.

Georgia↗

PubMedDate not supplied

Preserving residents' rights in long-term care settings: a values-based approach to restraint reduction.

This article describes a knowledge transfer process that was developed by Catholic Health East (CHE), headquartered in Newtown Square, PA, and that focuses upon one indicator of care, physical restraint use, in the skilled nursing/long-term care setting. The values-based process focuses on preserving residents' rights and using comparative data sharing as the basis for identifying opportunities for improvement. Further, it builds upon a collaborative cyclical model employed by all the CHE System's freestanding and hospital-based long-term care facilities. The experiences of four of the system's facilities are described; each one demonstrates different aspects of implementing mission-oriented strategies to target restraint reduction.

Accidental Falls↗

PubMed2026

Genomic Medicine Sweden: Advancing precision medicine at the national level.

High-throughput sequencing has transformed clinical diagnostics of rare diseases (RD), cancer and infectious diseases by enabling the identification of disease-causing genetic alterations and facilitating individualised treatment and care. In response to these advances, Genomic Medicine Sweden (GMS) was established in 2017 as a national collaborative effort to accelerate implementation of genomics-based precision medicine within Sweden's regionally organized, publicly funded healthcare system. GMS brings together the seven university healthcare regions and their associated medical faculties, in collaboration with healthcare regions across Sweden, Science for Life Laboratory, patient organizations, industry and governmental agencies. Activities are coordinated through national disease-specific expert groups, supported by cross-cutting functions in bioinformatics, health economics, ethics, education and patient engagement. At the operational level, seven Genomic Medicine Centres, embedded at university hospitals, develop and deliver harmonised genomic diagnostics nationwide. The National Genomics Platform provides secure infrastructure for large-scale data storage, analysis, and national and international data sharing. Following initial project-based funding, GMS now receives long-term governmental support. This review describes the national implementation of genomic-based precision diagnostics, discusses challenges and lessons learnt, and highlights key milestones across disease areas, including whole-genome sequencing in RD and paediatric cancer, comprehensive genomic profiling of haematological malignancies and solid tumours, pathogen genomics in microbiology, pharmacogenomic testing and emerging applications of polygenic risk scores in complex diseases. Collectively, these efforts have contributed to more than 500,000 genomic tests being performed within Swedish healthcare between 2017 and 2025. Finally, we outline future diagnostic needs and priority areas to ensure sustainable, scalable and equitable access to precision medicine.

Precision Medicine↗

PubMed2000

Neuroscience. A ruckus over releasing images of the human brain.

A plan to have scientists deposit functional magnetic resonance images of the brain in a public center at Dartmouth College as a condition of publication has drawn a flurry of objections. Brain scientists warn that if the project goes forward as planned, it could compromise the privacy of research subjects, get tangled up in technical knots, and rob authors of the credit they deserve. A new task force is attempting to elicit a consensus and draft a set of data-sharing guidelines supported by the entire field.

Brain↗

PubMedDate not supplied

Evaluation of the clinical LOINC (Logical Observation Identifiers, Names, and Codes) semantic structure as a terminology model for standardized assessment measures.

OBJECTIVE: The purpose of this study was to test the adequacy of the Clinical LOINC (Logical Observation Identifiers, Names, and Codes) semantic structure as a terminology model for standardized assessment measures. METHODS: After extension of the definitions, 1, 096 items from 35 standardized assessment instruments were dissected into the elements of the Clinical LOINC semantic structure. An additional coder dissected at least one randomly selected item from each instrument. When multiple scale types occurred in a single instrument, a second coder dissected one randomly selected item representative of each scale type. RESULTS: The results support the adequacy of the Clinical LOINC semantic structure as a terminology model for standardized assessments. Using the revised definitions, the coders were able to dissect into the elements of Clinical LOINC all the standardized assessment items in the sample instruments. Percentage agreement for each element was as follows: component, 100 percent; property, 87.8 percent; timing, 82.9 percent; system/sample, 100 percent; scale, 92.6 percent; and method, 97.6 percent. DISCUSSION: This evaluation was an initial step toward the representation of standardized assessment items in a manner that facilitates data sharing and re-use. Further clarification of the definitions, especially those related to time and property, is required to improve inter-rater reliability and to harmonize the representations with similar items already in LOINC.

Databases, Factual↗

PubMed1999

Testing for linkage under robust genetic models.

Robust genetic models are used to assess linkage between a quantitative trait and genetic variation at a specific locus using allele-sharing data. Little is known about the relative performance of different possible significance tests under these models. Under the robust variance components model approach there are several alternatives: standard Wald and likelihood ratio tests, a quasilikelihood Wald test, and a Monte Carlo test. This paper reports on the relative performance (significance level and power) of the robust sibling pair test and the different alternatives under the robust variance components model. Simulations show that (1) for a fixed sample size of nuclear families, the variance components model approach is more powerful than the robust sibling pair approach; (2) when the number of nuclear families is at least approximately 100 and heritability at the trait locus is moderate to high (>0.20) all tests based on the variance components model are equally effective; (3) when the number of nuclear families is less than approximately 100 or heritability at the trait locus is low (<0. 20), on balance, the Monte Carlo test provides the best power and is the most valid. The different testing procedures are applied to determine which are able to detect the known association between low density lipoprotein cholesterol and the common genotypes at the locus encoding apolipoprotein E. Results from this application show that the robust sibling pair method may be more effective in practice than that indicated by simulations.

Alleles↗

PubMed2005

Use of lung transplantation survival models to refine patient selection in cystic fibrosis.

Lung transplantation in cystic fibrosis may improve survival for patients with low 5-year predicted survival. Identifying characteristics that affect post-transplantation survival may improve patient selection and survival benefit. Using Cystic Fibrosis Foundation Patient Registry and United Network for Organ Sharing data, we identified 845 lung transplant recipients from 1991-2001, and 12,826 control patients from 1997. We used Cox proportional hazards models to identify variables that influence post-transplantation survival. To estimate the survival benefit of transplantation for patients affected by identified variables, we compared Kaplan-Meier survival curves of transplanted and control patients stratified by 5-year predicted survival. Post-transplantation survival improved annually. Youth, Burkholderia cepacia, and cystic fibrosis-related arthropathy increased the post-transplantation hazard of death. Compared with control subjects, transplanted adults with a 5-year predicted survival of less than 50% without B. cepacia or arthropathy have improved survival. Transplanted adults with B. cepacia, arthropathy, or a 5-year predicted survival of greater than 50% have decreased survival. Transplantation never improves survivorship for pediatric patients. Patients with arthropathy, B. cepacia infection, or younger age derive no aggregate survival benefit and must appraise carefully the high risk of decreased post-transplantation survival. Adult patients with low 5-year predicted survival without B. cepacia infection should receive priority for lung transplantation.

Adult↗

PubMed1994

Ethics in research: current issues for dental researchers and their professional society.

Values associated with scientific investigations affect the conduct, evaluation, and reporting of research and lead to ethical issues for scientists engaged in dental research. This essay examines the relationship between scientists and the larger society in which they work, and how that relationship defines the boundaries of scientific freedom and autonomy, on the one hand, and scientific responsibility and accountability, on the other. Values underlie disputes over data sharing, perceptions of conflict of interest, and scientists' commitment to research integrity. Professional societies, such as the IADR, can be a major influence in shaping the moral tone and ethical climate for research through the adoption of standards, the development of educational programs designed to reinforce those standards, and the public recognition of responsible conduct on the part of scientists.

Conflict of Interest↗

PubMed2004

Expanding the three Rs to meet new challenges in humane animal experimentation.

The Three Rs are the main principles used by Animal Ethics Committees in the governance of animal experimentation, but they appear not to cover some ethical issues that arise today. These include: a) claims that certain species should be exempted on principle from harmful research; b) increased emphasis on enhancing quality of life of research animals; c) research involving genetically modified (GM) animals; and d) animals bred as models of disease. In some cases, the Three Rs can be extended to cover these developments. The burgeoning use of GM animals in science calls for new forms of reduction through improved genetic modification technology, plus continued attention to alternative approaches and cost-benefit analyses that include the large numbers of animals involved indirectly. The adoption of more expanded definitions of refinement that go beyond minimising distress will capture concerns for enhancing the quality of life of animals through improved husbandry and handling. Targeting refinement to the unpredictable effects of gene modification may be difficult; in these cases, careful attention to monitoring and endpoints are the obvious options. Refinement can also include sharing data about the welfare impacts of gene modifications, and modelling earlier stages of disease, in order to reduce the potential suffering caused to disease models. Other issues may require a move beyond the Three Rs. Certain levels of harm, or numbers and use of certain species, may be unacceptable, regardless of potential benefits. This can be addressed by supplementing the utilitarian basis of the Three Rs with principles based on deontological and relational ethics. The Three Rs remain very useful, but they require thoughtful interpretation and expansion in order for Animal Ethics Committees to address the full range of issues in animal-based research.

Animal Experimentation↗

PubMed2001

Joint actions of parents and adolescents in health conversations.

Based on an action theory approach, 32 videotaped parent-adolescent conversations about health in two Canadian ethno-cultural groups were analyzed to identify and describe the joint action of parents and adolescents in the health domain. The data include manifest behavior (the conversation), internal processes (recalled thoughts and feelings on viewing the videotape of the conversation), and social meaning. These data were analyzed using the goals, functions, and elements of the conversations. Five categories of joint actions emerged from these data: sharing and exploring information, values, and beliefs about health; negotiating and struggling about aspects of the adolescent's independence; providing and receiving guidance; adjusting to family and home issues; and fostering joint understanding by giving voice to the adolescent.

Adolescent↗

PubMedDate not supplied

Commentary: applying hospital quality indicators to clinical practice.

Hospitals use various methods to establish performance benchmarks. This may include cooperative data shared between organizations to allow broad, general comparisons. These can, however, be misinterpreted as representing standards of patient care. In the authors' institution, a more complete examination was made of one of these quality indicators when it appeared quality indicator standards were in conflict with standards of patient care. The authors conclude that quality indicators are valuable when screening a hospital, just as we utilize screening tests to identify patients at potential risk. Neither should we apply broad quality indicators as standards of care without a full understanding of their strengths and weaknesses and the foundation on which they are built.

Accreditation↗

PubMedDate not supplied

United States medical practice summary: innovative off-label medication use.

Data are limited regarding how academic medical centers (AMCs) deal with medication use that represents a departure from product labeling; has reasonable rationale for use, but insufficient evidence to allay safety, efficacy, and cost-effectiveness concerns; yet is not clinical research (defined as innovative off-label medication use). This report describes national trends in management of innovative off-label medication use. A cross-sectional survey of US AMCs was conducted. Survey questionnaires were directed to drug information centers or pharmacy directors. Of 469 AMCs contacted, 104 responded (22%). Fifty-nine AMCs identified innovative off-label use as a challenge. Only 18 AMCs developed strategies to address this issue: 12 requiring initial reviews and 8 requiring clinical monitoring. Sixty-five AMCs indicated interest in data sharing of clinical outcomes for innovative off-label protocol(s). Innovative off-label medication use is a widely recognized challenge; however, few prospectively active AMC responses exist. The authors suggest development of systematic structured approaches within and across AMCs.

Cross-Sectional Studies↗

PubMed2003

Strategies for continued successful treatment of Alzheimer's disease: switching cholinesterase inhibitors.

Cholinesterase (ChE) inhibitors represent the standard therapeutic approach to the treatment of Alzheimer's disease (AD). However, a proportion of patients experience lack or loss of therapeutic benefit with an initial agent, or discontinue due to safety/tolerability issues. In many instances, no alternative treatment is offered once the initial agent has been stopped. Thus, for many patients, the total duration of treatment is relatively short in comparison with the chronic nature of AD. Switching medications is a common therapeutic strategy within many drug classes across many clinical areas following a lack/loss of efficacy or safety/tolerability problems, and is also an increasingly important concept in the management of AD with ChE inhibitors. A number of open-label studies, where patients were switched from donepezil to rivastigmine, have indicated that approximately 50% of patients experiencing a lack/loss of efficacy with donepezil (a selective acetylcholinesterase [AChE] inhibitor) respond to subsequent treatment with rivastigmine (a dual AChE and butyrylcholinesterase inhibitor). In these studies, rivastigmine was well tolerated, and the occurrence of safety/tolerability problems with donepezil was not predictive of similar problems with rivastigmine. In the summer of 2002, leading neurologists and psychiatrists attended a medical experts meeting to discuss the clinical importance of switching ChE inhibitors in AD. The expert panel examined available clinical data, shared clinical experiences, and discussed current clinical guidelines for switching. The panel also aimed to reach consensus on 'whom to switch', 'when to switch' and 'how to switch'. The key findings from that meeting are reported in this review.

Alzheimer Disease↗

PubMed2005

Toward semantic interoperability in home health care: formally representing OASIS items for integration into a concept-oriented terminology.

OBJECTIVE: The authors aimed to (1) formally represent OASIS-B1 concepts using the Logical Observation Identifiers, Names, and Codes (LOINC) semantic structure; (2) demonstrate integration of OASIS-B1 concepts into a concept-oriented terminology, the Medical Entities Dictionary (MED); (3) examine potential hierarchical structures within LOINC among OASIS-B1 and other nursing terms; and (4) illustrate a Web-based implementation for OASIS-B1 data entry using Dialogix, a software tool with a set of functions that supports complex data entry. DESIGN AND MEASUREMENTS: Two hundred nine OASIS-B1 items were dissected into the six elements of the LOINC semantic structure and then integrated into the MED hierarchy. Each OASIS-B1 term was matched to LOINC-coded nursing terms, Home Health Care Classification, the Omaha System, and the Sign and Symptom Check-List for Persons with HIV, and the extent of the match was judged based on a scale of 0 (no match) to 4 (exact match). OASIS-B1 terms were implemented as a Web-based survey using Dialogix. RESULTS: Of 209 terms, 204 were successfully dissected into the elements of the LOINC semantics structure and integrated into the MED with minor revisions of MED semantics. One hundred fifty-one OASIS-B1 terms were mapped to one or more of the LOINC-coded nursing terms. CONCLUSION: The LOINC semantic structure offers a standard way to add home health care data to a comprehensive patient record to facilitate data sharing for monitoring outcomes across sites and to further terminology management, decision support, and accurate information retrieval for evidence-based practice. The cross-mapping results support the possibility of a hierarchical structure of the OASIS-B1 concepts within nursing terminologies in the LOINC database.

Dictionaries, Medical as Topic↗