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PubMed2006

Supporting continuity of information in the patient transfer process should there be a minimum data set across care settings?

Existing clinical information systems do not facilitate the easy transfer of relevant clinical information; hence there are significant disparities in both the type and timeliness of information that accompanies a patient transfer between care settings. Patient data is commonly fragmented between various health care settings and providers, further contributing to a reduction in the quality of information that is shared. Delineating a transfer minimum data set would provide the basis for communicating consistent information between care settings.

Continuity of Patient Care↗
PubMedDate not supplied

Exploring and developing a college's community of interest: an appreciative inquiry.

This study examined what the Commission on Collegiate Nursing Education identifies as a college of nursing's internal and external "community of interest." Using "appreciative inquiry" in this study of a college campus, we examined the parts of the historical past that the community believed should be maintained, its vision of excellence for the college, the ways in which the vision could be realized, and its part in fulfilling the expectations of a shared, co-created vision. Investigators collected data using a self-developed, one-on-one interview and focus-group format and analyzed the data using content analysis. The findings suggest that the community shared values of preserving the college's past and of its vision for the college's future. However, it differed in the means of putting its co-created vision into practice and in defining its contributions in realizing the vision it created for the college.

Administrative Personnel↗
PubMed2005

Qualitative data analysis using data displays.

The amount of data generated in qualitative research can be difficult to manage. In this paper Tracey Williamson and Andrew Long discuss how the use of data displays can improve data management and also how the process can help to make the routes from raw data to research findings in qualitative research more transparent. Data displays can take several forms but share the benefit of helping to condense large amounts of data into more manageable forms. They can also help to convey information in a visually stimulating format where presentation time or column space may be limited.

Data Display↗
PubMed1999

What lessons can be learned for cancer registration quality assurance from data users? Skin cancer as an example.

BACKGROUND: In cancer registration, data cleaning (i.e. amendments made by data users to datasets released by registries) is potentially informative for quality assurance, but generally underreported. AIM: To assess the scope for learning lessons about cancer registration quality assurance from a data user (using skin cancer as the example). METHODS: The main design features were: (i) A descriptive study identifying, qualitatively and quantitatively, the breadth, depth, and impact of quality assurance issues raised by a user cleaning Merseyside and Cheshire Cancer Registry skin cancer data. Errors were rectified and pitfalls for interpretation were identified. (ii) A nested validation of morphology and site coding on random samples of cutaneous malignant melanomas, basal cell carcinomas (BCC), and squamous cell carcinomas. The 33132-record dataset comprised: all registered skin lesions, except metastases; most recorded variables (about patient, lesion, treatment, outcome); for Merseyside and Cheshire residents diagnosed 1970-1991. RESULTS: (i) Ineligible cases represented 0.3% (97/33132), and were detected best by morphology checks. Most quality assurance issues identified related to local custom and practice, staff training, and computerization, being particularly illustrated by problematic BCC registration practice (e.g. records written over unchallenged by range checks; and idiosyncratic use of variables). (ii) Post-cleaning, morphology coding errors were minimal in the random samples. CONCLUSION: There is great scope for data users to contribute to cancer registration quality assurance. Ultimately, the study dataset appeared fit for epidemiological analysis and important quality assurance messages emerged. Shared explicit standard guidelines for data preparation and validation are needed by users, whose insights could and should be better recognized by cancer registries.

Adult↗
PubMed2004

Clonal evidence for the transduction of CD34+ cells with lymphomyeloid differentiation potential and self-renewal capacity in the SCID-X1 gene therapy trial.

Immune function has been restored in 9 of 10 children with X-linked severe combined immunodeficiency by gamma c gene transfer in CD34+ cells. The distribution of both T-cell receptor (TCR) V beta family usage and TCR V beta complementarity-determining region 3 (CDR3) length revealed a broadly diversified T-cell repertoire. Retroviral integration site analysis in T cells demonstrated a high number of distinct insertion sites, indicating polyclonality of genetically corrected cell clones, in all patients. Detection of gamma c transgene expression on patients' mature myeloid cells has prompted us to investigate the nature of the most immature transduced hematopoietic precursor cells. Insertion sites shared by T and B lymphocytes as well as highly purified granulocytes and monocytes demonstrate the correction of common multipotent progenitor cells. Moreover, our data show that differentiated leukocytes share the same exact insertion sites with CD34+ cells that we obtained 8 months later and that were able to generate long-term culture-initiating cells (LTC-ICs). This finding demonstrates the initial transduction of very primitive multipotent progenitor cells with self-renewal capacity. These results provide a first evidence in the setting of a clinical trial that CD34+ cells maintain both lymphomyeloid potential as well as self-renewal capacity after ex vivo manipulation.

Antigens, CD34↗
PubMed2026

Research on the genome of microorganisms: ethical considerations and recommendations regarding the incidental bystander sequencing of human genetic material.

In genomic research primarily targeting microorganisms (or pathogens), a substantial risk exists that the presence of human genetic bycatch is not sufficiently recognised, and that the potential harm of unwarranted analysis, access, or sharing of human genetic bystander data is also insufficiently acknowledged or mitigated. In this Personal View, we contend that mandatory risk mitigation measures are necessary, more so in view of the likely increase of sharing of materials and pathogen sequence information under the WHO Pandemic Agreement and the related Pathogen Access and Benefit Sharing framework. Based on a joint reflection of the Institutional Review Board and individual researchers at the Institute of Tropical Medicine in Antwerp, Belgium, we propose a four-step approach to mitigate such risks: prevention or early removal of human genetic sequences, secure storage of samples and data, adaptation of informed consent, and targeted ethics review. This approach should contribute to maintaining ethical integrity, protect the rights of individuals and communities, and bolster public trust in the expanding use of untargeted sequencing in global health research.

Humans↗
PubMed1997

Dietary restriction in rhesus monkeys: lymphopenia and reduced mitogen-induced proliferation in peripheral blood mononuclear cells.

Dietary restriction (DR) markedly extends mean and maximal life span, and retards the rate of biological aging in rodent models; however, it is unknown if these results occur in primate species. The purpose of the current study was to investigate selected immunologic outcomes in Rhesus monkeys subjected to DR for a period of seven years. Similar to observations in mice on DR, lymphopenia occurred in the restricted monkeys. Compared to normally fed controls, the mitogen-induced proliferative responses of peripheral blood mononuclear cells (PBMC) were reduced in monkeys subjected to DR very early in life (up to 1 year), but not in others restricted in young adulthood (3-5 years). These data indicate that lymphopenia is a shared occurrence in rodents and primates on DR. However, the mitogen-induced proliferative data accumulated in rodents and primates cannot now be compared because PBMC have not been studied long enough or in comparable detail in primates fed restricted diets.

Aging↗
PubMed1999

Benchmarking organ procurement organizations: a national study.

OBJECTIVE: An exploratory examination of the technical efficiency of organ procurement organizations (OPOs) relative to optimal patterns of production in the population of OPOs in the United States. DATA SOURCES: A composite data set with the OPO as the unit of analysis, constructed from a 1995 national survey of OPOs (n = 64), plus secondary data from the Association of Organ Procurement Organizations and the United Network for Organ Sharing. STUDY DESIGN: The study uses data envelopment analysis (DEA) to evaluate the technical efficiency of all OPOs. PRINCIPAL FINDINGS: Overall, six of the 22 larger OPOs (27 percent) are classified as inefficient, while 23 of the 42 smaller OPOs (55 percent) are classified as inefficient. Efficient OPOs recover significantly more kidneys and extrarenal organs; have higher operating expenses; and have more referrals, donors, extrarenal transplants, and kidney transplants. The quantities of hospital development personnel and other personnel, and formalization of hospital development activities in both small and large OPOs, do not significantly differ. CONCLUSIONS: Indications that larger OPOs are able to operate more efficiently relative to their peers suggest that smaller OPOs are more likely to benefit from technical assistance. More detailed information on the activities of OPO staff would help pinpoint activities that can increase OPO efficiency and referrals, and potentially improve outcomes for large numbers of patients awaiting transplants.

Benchmarking↗
PubMed2002

Search for a shared segment on chromosome 10q26 in patients with bipolar affective disorder or schizophrenia from the Faroe Islands.

Previous linkage studies have suggested a new locus for bipolar affective disorder and possibly also for schizophrenia on chromosome 10q26. We searched for allelic association and chromosome segment and haplotype sharing on chromosome 10q26 among distantly related patients with bipolar affective disorder or schizophrenia and controls from the relatively isolated population of the Faroe Islands by investigating 22 microsatellite markers from a 35 cM region. We used a combined approach with both assumption free tests and tests based on genealogical relationships. The 6.5 cM region between D10S1230 and D10S2322, which has been implied in previous linkage analyses, received some support. A search for segment sharing yielded empirical P-values around 0.02 among patients with bipolar affective disorder and around 0.03 for patients with schizophrenia. For both disorders combined allelic association yielded empirical P-values around 0.003 at marker D10S1723. A haplotype data mining approach supported haplotype sharing in this region. In another, more distal, 11.5 cM region between markers D10S214 and D10S505, which has received support in previous linkage studies, increased haplotype sharing in patients with bipolar affective disorder was supported by Fisher's exact test, tests based on genealogy and by haplotype data mining. Our findings yield some support for a risk gene for bipolar affective disorder and possibly also for schizophrenia.

Alleles↗
PubMed2026

Genomic science and the nurse educator's role: Promoting integration from curriculum to clinical practice.

BACKGROUND: Registered nurses and nurse educators play a critical role in preparing future clinicians to translate genomic discoveries into practice. However, emerging evidence suggests that both groups may lack sufficient knowledge and confidence in genomics, potentially limiting their ability to teach, mentor, and apply genomics in real-world settings. This gap is especially concerning in Aotearoa New Zealand, where the genomic literacy of nurse educators and clinicians remains underexplored. OBJECTIVE: This study aims to: (1) assess nurse educators' genomic literacy and confidence in teaching genomics; and (2) evaluate registered nurses' knowledge and confidence in applying and teaching genomics in clinical practice. DESIGN: Exploratory descriptive qualitative. SETTING: This study was conducted in the greater Auckland area. PARTICIPANTS: A total of 17 participants were recruited using purposive sampling to ensure a diverse range of perspectives across varying levels of teaching experience, disciplinary backgrounds, and exposure to genomic content. METHODS: Data were collected using semi-structured focus group interviews, a method well-suited for generating in-depth discussion and facilitating interaction among participants with shared professional interests. The collected data were analysed using thematic analysis methods. RESULTS: The findings offer insight into the preparedness of New Zealand's nursing workforce to engage with genomic-informed healthcare and inform strategies for integrating genomics into nursing curricula and continuing professional development. Given the interdisciplinary nature of genomic healthcare, these insights may also be relevant to other health professionals-including midwives, pharmacists, and allied health practitioners-who increasingly encounter genomic information in clinical practice and require foundational competencies to support patient care. CONCLUSION: Addressing this educational gap is critical to ensuring that nurses-key facilitators of patient care and public health-are equipped to deliver safe, equitable, and evidence-based genomic healthcare.

Humans↗
PubMed1986

HLA haplotype sharing and proband genotype in IDDM.

We previously proposed that the HLA-related genetic susceptibility to insulin dependent diabetes mellitus (IDDM) is best explained by at least two different susceptibility alleles, one preferentially associated with DR3, the other with DR4. This IDDM HLA heterogeneity model predicts that HLA haplotype sharing among affected sibpairs will be increased when the index case is a compound heterozygote (i.e., DR3/DR4). This prediction was tested and confirmed using the GAW IV IDDM data set. A significantly increased sharing of HLA haplotypes was seen when the index sib was DR3/DR4 compared to those of other genotypes (68% versus 37% sharing 2 haplotypes, p less than .01).

Alleles↗
PubMed2002

Data management and quality assurance for an International project: the Indo-US Cross-National Dementia Epidemiology Study.

BACKGROUND: Data management and quality assurance play a vital but often neglected role in ensuring high quality research, particularly in collaborative and international studies. OBJECTIVE: A data management and quality assurance program was set up for a cross-national epidemiological study of Alzheimer's disease, with centers in India and the United States. METHODS: The study involved (a) the development of instruments for the assessment of elderly illiterate Hindi-speaking individuals; and (b) the use of those instruments to carry out an epidemiological study in a population-based cohort of over 5000 persons. Responsibility for data management and quality assurance was shared between the two sites. A cooperative system was instituted for forms and edit development, data entry, checking, transmission, and further checking to ensure that quality data were available for timely analysis. A quality control software program (CHECKS) was written expressly for this project to ensure the highest possible level of data integrity. CONCLUSIONS: This report addresses issues particularly relevant to data management and quality assurance at developing country sites, and to collaborations between sites in developed and developing countries.

Alzheimer Disease↗
PubMed2001

Modelling health care processes for eliciting user requirements: a way to link a quality paradigm and clinical information system design.

Healthcare institutions are looking at ways to increase their efficiency by reducing costs while providing care services with a high level of safety. Thus, hospital information systems have to support quality improvement objectives. The elicitation of the requirements has to meet users' needs in relation to both the quality (efficacy, safety) and the monitoring of all health care activities (traceability). Information analysts need methods to conceptualise clinical information systems that provide actors with individual benefits and guide behavioural changes. A methodology is proposed to elicit and structure users' requirements using a process-oriented analysis, and it is applied to the blood transfusion process. An object-oriented data model of a process has been defined in order to organise the data dictionary. Although some aspects of activity, such as 'where', 'what else', and 'why' are poorly represented by the data model alone, this method of requirement elicitation fits the dynamic of data input for the process to be traced. A hierarchical representation of hospital activities has to be found for the processes to be interrelated, and for their characteristics to be shared, in order to avoid data redundancy and to fit the gathering of data with the provision of care.

Cost Control↗
PubMed2000

Aetiology of teenage childbearing: reasons for familial effects.

The aims of the present study were to evaluate the contribution of the genetic and environmental factors to the risk of teenage childbearing, and to study whether life style, socio-economic conditions, and personality traits could explain possible familial effects. We linked two population-based registers: the Swedish Twin Register and the Swedish Medical Birth Register. The study covers female twin pairs born between 1953 and 1958, having their first infant before the age of 30 years (n = 1885). In order to separate familial effects from other environmental influences, and genetic effects from shared environmental effects, only complete twin pairs with known zygosity were included, in all 260 monozygotic and 370 dizygotic twin pairs. We used quantitative genetic analyses to evaluate the importance of genetic and environmental effects for liability to teenage childbearing. Logistic regression analyses were used to estimate the effects of life style, socio-economic situation, and personality on the probability of teenage childbearing, and to study whether psychosocial factors could explain possible familial effects. Fifty-nine percent (0-76%) of the variance in being a teenage mother was attributable to heritable factors; 0% (0-49%) was due to shared environmental factors; and 41% (23-67%) was explained by non-shared environmental factors. Thus, the data were consistent with the hypothesis that the familial aggregation of teenage childbearing is completely explained by genetic factors, although the alternative hypothesis that familial aggregation is entirely explained by shared environmental factors cannot be ruled out. Significant effects of smoking habits, housing conditions, and educational level were found in relation to liability to teenage childbearing. However, the familial effects on risk of teenage childbearing were not mediated through similarities in life style and socio-economic factors. When studying risk factors for teenage childbearing, it is recommended to include life style and socio-economic variables as well as information about family history of teenage childbearing. Twin Research (2000) 3, 23-27.

Adolescent↗
PubMed2003

Quality in point-of-care testing.

Point-of-care testing (POCT) is an increasingly popular means of providing laboratory testing at or near to the site of patient care. POCT provides rapid results and has the potential to improve patient outcome from earlier treatment. However, a faster result is not necessarily an equivalent result to traditional, core laboratory testing. Preanalytic, analytic and postanalytic factors can influence the quality of POCT and lead to misinterpretation. Concerns over the quality of POCT have resulted in a hierarchy of laboratory regulations in the USA and POCT guidelines are appearing in a number of countries worldwide. Quality POCT must control every aspect of the test and testing process that can affect the ultimate result. Laboratory quality regulations are very similar to industrial quality requirements and POCT can be viewed like any manufacturing business where the product being produced is the test result. Use of industrial management techniques, such as failure mode and effects analysis, can be applied to POCT to isolate and reduce the sources of testing error. Data management is fundamental to quality. Analyzing POCT data can show quality trends before they affect the result. Newer POCT devices have computerized data capture and storage functions that can collect the key information at the time the test is performed and later transmit that data to a POCT data manager or hospital information system. Recent standards, such as the National Committee for Clinical Laboratory Standards POCT1-A, provide a connectivity standard to allow different POCT devices to share a common interface and data manager system, reducing the cost of implementing and maintaining POCT. Guaranteeing POCT quality is resource-intensive and as healthcare budgets get tighter and staffing shortages grow, patient outcome must be weighed against available resources to determine optimum testing strategies. Use of the POCT literature can help establish an evidence-based justification to support POCT.

Clinical Laboratory Information Systems↗
PubMed1994

Market shares for rural inpatient surgical services: where does the buck stop?

Utilization of surgical services by rural citizens is poorly understood, and few data are available about rural hospitals' surgical market shares and their financial implications. Understanding these issues is particularly important in an era of financially stressed rural hospitals. In this study information about rural surgical providers and services was obtained through telephone interviews with administrators at Washington state's 42 rural hospitals. The Washington State Department of Health's Commission Hospital Abstract Recording System (CHARS) data were used to measure market shares and billed charges for rural surgical services. ZIP codes were used to assign rural residents to a hospital service area (HSA) of the nearest hospital, providing the geographic basis for market share calculations. "Total hospital expenses" from the American Hospital Association Guide were used as a proxy for hospital budget, and the surgical financial contribution was expressed as a ratio of billed surgical charges to total hospital expense. For rural hospitals as a whole, 21 percent of admissions and 43 percent of billed inpatient charges resulted from surgical services. In 1989, 27,202 rural Washington residents were hospitalized for surgery. Overall, 42 percent went to the closest rural hospital, 14 percent went to other rural hospitals, and 44 percent went to urban hospitals. The presence of surgical providers markedly increased local market shares, but a substantial proportion of basic surgical procedures bypassed available local services in favor of urban hospitals. For example, about one-third of patients needing cholecystectomies, a basic general surgery of low complexity, bypassed local hospitals with staff surgeons.(ABSTRACT TRUNCATED AT 250 WORDS)

Catchment Area, Health↗