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The implications of electronic health record for personalized medicine.

The emerging concept of an electronic health record (EHR) targeted at a patient centric, cross-institutional and longitudinal information entity (possibly spanning the individuals lifetime) has great promise for personalized medicine. In fact, it is probably the only vehicle through which we may truly realize the personalization of medicine beyond population-based genetic profiles that are expected to become part of medication and treatment indications in the near future. The new EHR standards include mechanisms that integrate clinical data with genomic testing results obtained through applying research-type procedures, such as full DNA sequencing, to an individual patient. Although the most optimal process for the utilization of integrated clinical-genomic data in the EHR framework is still unclear, the new Health Level Seven (HL7) Clinical Genomics Draft Standard for Trial Use suggests using the 'encapsulate & bubble-up' approach, which includes two main phases: the encapsulation of raw genomic data and bubbling-up the most clinically significant portions of that data, while associating it with clinical phenotypes residing in the individual's EHR.

Computational Biology↗

Characteristics of individuals with integrated pensions.

Employer pensions that integrate benefits with Social Security have been the focus of relatively little research. Since changes in Social Security benefit levels and other program characteristics can affect the benefit levels and other features of integrated pension plans, it is important to know who is covered by these plans. This article examines the characteristics of workers covered by integrated pension plans, compared to those with nonintegrated plans and those with no pension coverage. Integrated pension plans are those that explicitly adjust their benefit structure to help compensate for the employer's contributions to the Social Security program. There are two basic integration methods used by defined benefit (DB) plans. The offset method causes a reduction in employer pension benefits by up to half of the Social Security retirement benefit; the excess rate method is characterized by an accrual rate that is lower for earnings below the Social Security taxable maximum than above it. Defined contribution (DC) pension plans can be integrated along the lines of the excess rate method. To date, research on integrated pensions has focused on plan characteristics, as reported to the Bureau of Labor Statistics (BLS) through its Employee Benefits Survey (EBS). This research has examined the prevalence of integration among full-time, private sector workers by industry, firm size, and broad occupational categories. However, because the EBS provides virtually no data on worker characteristics, analyses of the effects of pension integration on retirement benefits have used hypothetical workers, varying according to assumed levels of earnings and job tenure. This kind of analysis is not particularly helpful in examining the potential effects of changes in the Social Security program on workers' pension benefits. However, data on pension integration at the individual level are available, most recently from the Health and Retirement Study (HRS), a nationally representative survey of individuals aged 51-61 in 1992. This dataset provides the basis for the analysis presented here. The following are some of the major findings from this analysis. The incidence of pension integration in the HRS sample is 32 percent of all workers with a pension (14 percent of all workers). The HRS can also identify integrated DC plans, a statistic that is not available from BLS data. The rate of integration for workers with only DC plans is 8 percent. After controlling for other variables, several socio-demographic characteristics are significantly related to the incidence of integration. The probability of having an integrated pension is 4.6 percentage points less for men compared to women. Non-Hispanic blacks are 6.4 percentage points less likely than non-Hispanic whites to have integrated pensions. Union members are 14 percentage points less likely to have integrated pensions, while workers with less than a graduate level education are at least 15 percentage points more likely to have a pension that is integrated. Some earnings and pension characteristics are also significantly correlated with pension integration. Earnings are positively related, with the probability of having an integrated pension increasing by 2 percentage points for an increase of $1,000 in annual pay. An even larger effect comes from earning at or above the Social Security taxable maximum. Workers at or above this income level are 10 percentage points more likely to have an integrated plan, but for those with more than one plan the probability of pension integration goes up by 13 percentage points.

Bias↗

Development of an integrated clinical database system for a regional mental health service.

The authors describe development of an automated system to provide caregivers in a regional mental health service in Calgary, Alberta, with access to information about persons with chronic mental illness served by the system. All participating organizations provided input about system design features and data elements. Issues of confidentiality of records were addressed. A working model demonstrated to caregivers was rated as useful and understandable by more than 90 percent of respondents.

Adolescent↗

Outcomes for home and community nursing in integrated delivery systems.

In these tumultuous times in health care, nursing providers are under pressure to capture data that demonstrate the effectiveness of nursing interventions on client health. At the University of Iowa, researchers are attempting to develop a client outcome classification system that uses a standardized language across different health care settings to capture this vital information.

Centers for Medicare and Medicaid Services, U.S.↗

Enterocutaneous Fistula-Associated Sepsis and Mortality: Development and Validation of a Multimodal Artificial Intelligence Prediction Model.

BACKGROUND: Predicting enterocutaneous fistula (ECF)-associated sepsis and mortality poses significant challenges in digital health care due to the disease's complexity and heterogeneous clinical manifestations. Current approaches that rely on single-modal data or traditional scoring systems often fail to capture the intricate immune-inflammatory dynamics and multisystem involvement in patients with ECF. OBJECTIVE: This study aims to develop an artificial intelligence (AI)-driven multimodal fusion model integrating clinical, imaging, and transcriptomic data for early prediction of ECF-associated sepsis and 28-day mortality, addressing the limitations of conventional single-dimensional models. METHODS: This study leveraged publicly available datasets (Medical Information Mart for Intensive Care III [MIMIC-III], electronic Intensive Care Unit [eICU], and The Cancer Genome Atlas) to construct a multimodal framework. Clinical parameters were processed using Extreme Gradient Boosting, abdominal imaging features were extracted via convolutional neural networks, and transcriptomic profiles were analyzed with variational autoencoders. A Transformer-based fusion network was employed for joint prediction and validated through cross-validation and external testing. Key features were identified using Shapley Additive Explanations and Local Interpretable Model-Agnostic Explanations interpretability algorithms, while immune regulatory mechanisms were explored via weighted gene co-expression network analysis. RESULTS: The multimodal model achieved an area under the curve (AUC) of 0.89 for predicting sepsis and 28-day mortality, outperforming unimodal models (clinical-only model, AUC 0.72, and imaging-only model, AUC 0.78). Critical predictors included Sequential Organ Failure Assessment score, lactate levels, intra-abdominal free fluid on imaging, and immunoregulatory genes (programmed death-ligand 1 [PD-L1] and indoleamine 2,3-dioxygenase 1 [IDO1]). Mechanistic analysis revealed distinct immune reprogramming in patients with sepsis, characterized by increased regulatory T cells and M2 macrophages, along with downregulated cluster of differentiation 8+ (CD8+) T cells. CONCLUSIONS: This multimodal AI model offers an innovative digital solution in medical informatics, enabling precise early risk stratification for ECF-associated sepsis. By integrating multisource data and providing interpretable insights into immune-inflammatory pathways, the model enhances health care quality for patients with ECF and paves the way for personalized intervention strategies.

Humans↗

Response and nonresponse bias in oral health surveys.

Oral health surveys are undertaken to provide estimates of the dental health and behaviors of populations or population subgroups. However, the integrity of the data from sample surveys may be compromised by one or more sources of sampling and nonsampling error. An important source of nonsampling error is the failure to collect data from some of the individuals comprising the sample. Consequently, the response to a sample survey, and the direction and magnitude of bias induced by nonresponse, need to be taken into account when using estimates derived from sample surveys. Although the response rate to a survey is usually used as an indicator of the quality of the data it provides, nonresponse error is a function of nonresponse and the extent of differences in the characteristics of responders and nonresponders. Nonresponse may be managed in two ways. The first is to reduce nonresponse to a minimum using response-enhancement strategies. The second is the post-survey adjustment of data using weighting or imputation techniques to produce estimates that correct for nonresponse. This paper discusses issues concerning response and nonresponse bias in oral health surveys and provides guidelines on the management and reporting of nonresponse. It describes response-enhancement strategies to reduce noncontacts and refusals, sources of data to facilitate the comparison of responders and nonresponders, methods of assessing the degree of bias induced by nonresponse, techniques for producing adjusted survey estimates, and the assumptions on which these procedures and processes are based.

Bias↗

Integrated Pollution Prevention and Control: a review of health authorities' experience.

In August 2000, health authorities in England and Wales became statutory consultees for permits issued to industry by the Environment Agency as part of the implementation of EU directives. This responsibility has since been delegated to Primary Care Trusts. To assess health authority responses to applications made under the Integrated Pollution Prevention and Control (IPPC) regulations, we collected data from public registers during the first 12 months of this new regulatory regime. There was evidence of 27 applications, of which 59 per cent had substantive comments from health authorities. There was wide variation in the length and content. Responses were from Consultants in Communicable Disease Control (57 per cent) or Directors of Public Health (43 per cent). Only two health authorities had a dedicated resource for responding to IPPC applications. Capacity and capability are lacking and require resources invested for consistent, effective public health input to the process of permitting potentially polluting industries.

England↗

Levels of analysis for the study of environmental health disparities.

Reducing racial/ethnic and socioeconomic environmental health disparities requires a comprehensive multilevel conceptual and quantitative approach that recognizes the various levels through which environmental health disparities are produced and perpetuated. We propose a conceptual framework that incorporates the micro level, contained within the local level, which in turn is contained within the macro level. We discuss the utility of multilevel techniques to examine environmental level (both physical and social) and individual-level factors to appropriately quantify and improve our understanding of environmental health disparities. We discuss the reasoning and the methodological approach behind multilevel modeling, including differentiating between individual and contextual influences on individual outcomes. Next we address the questions and principles that guide the choice of levels or geographic units in multilevel studies. Finally, we address the ways in which different data sources can be combined to produce suitable data for multilevel analyses. We provide some examples of how such data sources can be linked to create multilevel data structures, and offer suggestions to facilitate the integration of multilevel techniques in environmental health disparities research and monitoring.

Environmental Exposure↗

The guideline of the personal health data structure to secure safety healthcare. The balance between use and protection to satisfy the patients' needs.

PURPOSE: To inform about the impact of a recent movement towards a policy to develop integrative networked electronic health record (EHR) as a basis for cooperation among care teams and with patients and in support of safe patient care in Japan. METHODS: The author headed a commission developing policy for health record (HR) structure and its computerization. It executed two questionnaire surveys as the basis for its work. One survey assessed the current state of computerization of health record in the hospitals certified by Japan Council for Quality Health Care (JCQHC). The other survey assessed the attitudes towards a specific EHR system in the Hiroshima University Hospital and its affiliate hospitals. RESULTS: The survey of the above hospitals showed that most have computer supported administrative procedures, but only few computer-based health records. The attitudes of the Hiroshima EHR users show that while they expect efficiency and quality improvements, there is also apprehension that the system in use might lower practical efficiency and compromise patient safety. Accordingly, health recording requirements and storage policy have been restructured and communicated to the hospitals. CONCLUSION: These insights led to the initiation of curricula educating "Health Information Technologist" which is promoted by Japan Association Medical Informatics and the criterion of Chart Review Promotion of JCQHC. They will also lead to recommendation for improved and advanced EHR.

Confidentiality↗

[Reproductive characteristics of women from 15 to 49 years of age: comparative studies and planning for actions].

INTRODUCTION: The availability of socioeconomic, demographic and reproductive health data about women at national, regional and municipal levels allows comparisons between regions and may offer background information for planning actions of the Program of Integrated Assistance for Women's Health. METHODS: A population-based cross-sectional study was carried out in Southern Brazil. Three thousand and two women aged 15 to 49 years living in an urban area in Pelotas, were selected for inclusion in the study. A structured questionnaire was used to collect the socioeconomic, demographic and reproductive characteristics. The analysis included comparison of means and proportions. In the sterilization analysis the data were controlled for age. RESULTS: Nearly 56% of the women were married/in union and 35% were single. A third of them were housewives and 50% were wage workers. The mean of schooling was 8.5 years. Almost, half of the adolescents (15 to 19 years old) have an active sexual life, and of those 33% had already been pregnant. A high percentage of unwanted pregnancy was reported, mainly among younger women. Near the end of their reproductive life (women aged 45 to 49 years) the mean of children per woman was 2.4. The most prevalent methods were pill and sterilization. Among married women or those living in consensual union, 15% had been sterilized. The sterilization rate increased with age and attained nearly 25% of women aged over 35 years; 29.6% of sterilized women had had a stillborn child and 18.3% a pre-term baby; 20% of husbands/partners did not accept the use of any contraceptive method. CONCLUSIONS: The study results confirm the need for additional attention to and development of special programs for adolescents, improvements in the access to services, increase in the use of the contraceptive options already available and research and programatic actions related to the theme "men/reproductive health.

Abortion, Induced↗

Preparing for a decision support system.

The increasing pressure to reduce costs and improve outcomes is driving the health care industry to view information as a competitive advantage. Timely information is required to help reduce inefficiencies and improve patient care. Numerous disparate operational or transactional information systems with inconsistent and often conflicting data are no longer adequate to meet the information needs of integrated care delivery systems and networks in competitive managed care environments. This article reviews decision support system characteristics and describes a process to assess the preparedness of an organization to implement and use decision support systems to achieve a more effective, information-based decision process. Decision support tools included in this article range from reports to data mining.

Decision Support Systems, Management↗

Working toward quality improvement.

The National Forum for Health Care Quality Measurement and Reporting was created to develop and implement a national strategy for measuring and reporting health care quality. It grew from a report issued in 1998 by the President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry, which proposed the creation of the Quality Forum as part of an integrated national quality improvement agenda.

Data Collection↗

The economics of lung cancer management in Canada.

Because lung cancer is a major health care problem in Canada, it is imperative to understand how resources are used to diagnose and treat this disease. This paper describes a method of modelling the direct patient care costs for lung cancer from the perspective of the government as payer in a universal health care system. Clinical algorithms were developed to describe the management of non-small cell (NSCLC) and small cell (SCLC) lung cancer. Patients were allocated to the treatment algorithms in the model based on a knowledge of their distribution by cell type and stage in Canadian cases. A microsimulation model developed by Statistics Canada was used to integrate the data on type of lung cancer, extent of disease, clinical management, survival and health care resource utilization. The direct care costs for diagnosis and treatment of NSCLC ranged from $Cdn 17 889 for the surgery/post-operative radiotherapy treatment of Stages I and II to $Cdn 6333 for supportive care for patients with Stage IV disease. The costs of determining relapse for NSCLC were estimated to be $Cdn 1528 and terminal care costs, made up largely of hospitalization charges and some palliative radiotherapy, were $Cdn 10 331. Direct care costs for the diagnosis and initial treatment of SCLC ranged from $Cdn 18 691 for management of limited stage disease to $Cdn 4739 for the supportive care of patients with extensive disease. The cost of determining relapse for SCLC was estimated to be $Cdn 1590 and terminal care costs averaged $Cdn 9966. For all 15 624 cases of lung cancer diagnosed in Canada in 1988, it was estimated that the total cost of providing treatment and follow-up, and managing relapse over 5 years was $Cdn 328 million. Despite the large total cost of lung cancer management, estimates of cost effectiveness of therapy showed that the cost per life year gained was approximately $Cdn 11 000 for NSCLC and $Cdn 19 560 for SCLC. These estimates of the direct health care costs assume that all patients have access to care, treatment is uncomplicated and practice is standard, and must be viewed as an idealized assessment of the cost of lung cancer management. The microsimulation model, however, does provide a useful framework for evaluating the costs of new diagnostic procedures, treatment strategies and new drugs.

Canada↗

Providing location-independent access to patient clinical narratives using Web browsers and a tiered server approach.

Health care today depends upon timely access to patient medical data and the latest medical knowledge. As we make the transition from a hospital-based organization to an integrated health care delivery system, patient care information must move throughout the organization quickly and efficiently over increasing distances. The emergence of widely-dispersed referral networks demands novel solutions to the problems of delivering patient care information to providers. We have developed a mechanism to provide location-independent access to clinical narrative reports using a multi-tiered server model and World Wide Web technologies for delivery. To successfully deploy such a system to sites separated by large distances, it is important to reduce complexity at the client site. Using a "thin client", such as a web browser, in our design facilitates deployment and support while reducing cost per user. This architecture allows the application to be updated without modification to the end-user software and eases maintenance over long distances.

Computer Communication Networks↗

Can it be done? Implementing adolescent clinical preventive services.

OBJECTIVE: To evaluate the implementation of an intervention to increase the delivery of adolescent preventive services within a large managed care organization. Target health areas were tobacco, alcohol, sexual behavior, and safety (seat belt and helmet use). DATA SOURCE/STUDY DESIGN: Adolescent reports of clinician screening and counseling were obtained from adolescents who attended well visits with their primary care providers. A prepost study design was used to evaluate the preventive services intervention. The intervention had three components: (1) 89 clinicians from three outpatient pediatric clinics attended a training to increase the delivery of preventive services; (2) customized adolescent screening and provider charting forms were integrated into the clinics; and (3) the resources of a health educator were provided to the clinics. DATA COLLECTION: Following a visit, adolescents completed surveys reporting on clinician screening and counseling for each of the target risk areas. Preimplementation (three months), 104 adolescents completed surveys. Postimplementation of the training, tools, and health educator intervention, 211 adolescents completed surveys (five months). For 18 months postimplementation clinicians delivered services and 998 adolescents completed surveys. PRINCIPAL FINDINGS: Chi-square analyses of changes in screening from preimplementation to postimplementation showed that screening increased in all areas (p < .000), with an average increase in screening rates from 47 percent to 94 percent. Postimplementation counseling in all areas also increased significantly, with an average increase in counseling rates from 39 percent to 91 percent. There were slight decreases in screening from postimplementation to follow-up. CONCLUSIONS: This study offers support for the efficacy of providing training, tools, and resources as a method for increasing preventive screening and counseling of adolescents across multiple risky health behaviors during a routine office visit.

Adolescent↗

Data needs in studies on equity in health and access to care--ethical considerations.

In order to study equity in health and access to care in an appropriate way, data are needed on an individual level and must include information about health, mortality, morbidity, utilization of care, age, sex, residential area, family situation and the social and economic circumstances of each individual. These data must be collected at several points of time during a life cycle. This is a demanding task requiring many resources and methodological and ethical considerations. The ethical and political trade-off is between our demand for knowledge and a fair distribution of resources in order to achieve equity in health and access to care and the need to administrate sensitive data without threatening personal integrity. In presenting results from Swedish studies, it is argued that the benefits of using registers for this kind of epidemiological research by far outweigh the risk of using registers.

Data Interpretation, Statistical↗

The early childhood caries prevention program in Palau.

Early Childhood Caries is a significant public health problem in Palau. Data have shown that nearly 80% of children ages 3-5 years of age in Palau experience dental caries and a significant number of these children require general anesthesia to treat or remove painful or infected carious teeth. In response to this growing problem, the Division of Oral Health has systematically developed a prevention program in collaboration with the Maternal and Child Health Unit under the Ministry of Health. The core program involves integrating preventive oral health services into all regular prenatal and postnatal care programs and improving the capacities of health professionals to provide such services. The program promotes the idea that oral health is an important component to overall health and all efforts are made to integrate oral health into broader public health initiatives. Both health and process outcomes are being monitored by an oral health surveillance system, while preliminary data show improved oral health among young children. This paper takes a closer look at the development of the Palau program.

Child, Preschool↗

A case/comparison study in the Eastern Region of Ghana on the effects of incorporating selected reproductive health services on family planning services.

OBJECTIVE: to assess the impact on the provision of family planning (FP) services when FP providers were also trained to provide additional, selected, reproductive health services. DESIGN: case/comparison study. PARTICIPANTS AND SETTINGS: twenty-four FP service delivery points in which training in sexually transmitted infection prevention and control services or post-abortion care services had been initiated (case facilities), were compared to 19 control facilities in which similar provider training had not yet been targeted. All settings were located in the Eastern Region of Ghana. MEASUREMENTS: service statistics for three study years (1996-1998) were reviewed. Structured interviews with providers, managers and clients provided qualitative data concerning impact and satisfaction. FINDINGS: case facilities which had integrated these additional reproductive health (RH) services experienced consistently higher numbers of clients and the total number of clients receiving FP services increased over time. There was also a statistically significant increase in continuing FP clients within case facilities. In contrast, the number of FP clients serviced in the comparison area remained basically unchanged over time. KEY CONCLUSIONS: interviews conducted with providers and managers in both types of settings indicated strong support for receipt of training to provide these integrated services and a request for additional training in an even broader array of RH and adult/child services. Clients also perceived the benefit of additional RH services and perceived these services to be of high quality. IMPLICATIONS FOR PRACTICE: expanding the repertoire of clinical skills of FP providers, enabling these practitioners to render RH services that augment basic FP services, has the potential to increase the number of new and continuing FP clients, and increases the satisfaction of both providers and consumers with respect to these services.

Abortion, Induced↗