Safe Utilization and Sharing of Genomic Data: Amendment to the Health and Medical Data Utilization Guidelines of South Korea.

Purpose: In 2024, medical researchers in the Republic of Korea were invited to amend the health and medical data utilization guidelines (Government Publications Registration Number: 11-1352000-0052828-14). This study aimed to show the overall impact of the guideline revision, with a focus on clinical genomic data. Materials and Methods: This study amended the pseudonymization of genomic data defined in the previous version through a joint study led by the Ministry of Health and Welfare, the Korea Health Information Service, and the Korea Genome Organization. To develop the previous version, we held three conferences with four main medical research institutes and seven academic societies. We conducted two surveys targeting special genome experts in academia, industry, and institutes. Results: We found that cases of pseudonymization in the application of genome data were rare and that there was ambiguity in the terminology used in the previous version of the guidelines. Most experts (> ~90%) agreed that the 'reserved' condition should be eliminated to make genomic data available after pseudonymization. In this study, the scope of genomic data was defined as clinical next generation sequencing data, including FASTQ, BAM/SAM, VCF, and medical records. Pseudonymization targets genomic sequences and metadata, embedding specific elements, such as germline mutations, short tandem repeats, single-nucleotide polymorphisms, and identifiable data (for example, ID or environmental values). Expression data generated from multi-omics can be used without pseudonymization. Conclusion: This amendment will not only enhance the safe use of healthcare data but also promote advancements in disease prevention, diagnosis, and treatment.

Physician-Centered EHR Data Utilization: A Pilot Study.

The utilization of vast amounts of EHR data is crucial to the studies in medical informatics. Physicians are medical participants who directly record clinical data into EHR with their personal expertise, making their roles essential in follow-up data utilization, which current studies have yet to recognize. This paper proposes a physician-centered perspective for EHR data utilization and emphasizes the feasibility and potentiality of digging into physicians' latent decision patterns in EHR. To support our proposal, we design a physician-centered CDS approach named PhyC and test it on a real-world EHR dataset. Experiments show that PhyC performs significantly better in the auxiliary diagnosis of multiple diseases than globally learned models. Discussions on experimental results suggest that physician-centered data utilization can help to derive more objective CDS models, while more means for utilization need further exploration.

Scientific impact of the National Birth Defects Prevention Network multistate collaborative publications.

BACKGROUND: Given the lack of a national, population-based birth defects surveillance program in the United States, the National Birth Defects Prevention Network (NBDPN) has facilitated important studies on surveillance, research, and prevention of major birth defects. We sought to summarize NBDPN peer-reviewed publications and their impact. METHODS: We obtained and reviewed a curated list of 49 NBDPN multistate collaborative publications during 2000-2022, as of December 31, 2022. Each publication was reviewed and classified by type (e.g., risk factor association analysis). Key characteristics of study populations and analytic approaches used, along with publication impact (e.g., number of citations), were tabulated. RESULTS: NBDPN publications focused on prevalence estimates (N = 17), surveillance methods (N = 11), risk factor associations (N = 10), mortality and other outcomes among affected individuals (N = 6), and descriptive epidemiology of various birth defects (N = 5). The most cited publications were those that reported on prevalence estimates for a spectrum of defects and those that assessed changes in neural tube defects (NTD) prevalence following mandatory folic acid fortification in the United States. CONCLUSIONS: Results from multistate NBDPN publications have provided critical information not available through other sources, including US prevalence estimates of major birth defects, folic acid fortification and NTD prevention, and improved understanding of defect trends and surveillance efforts. Until a national birth defects surveillance program is established in the United States, NBDPN collaborative publications remain an important resource for investigating birth defects and informing decisions related to health services planning of secondary disabilities prevention and care.

Quantifying the dynamic characteristics of indoor air pollution using real-time sensors: Current status and future implication.

People generally spend most of their time indoors, making indoor air quality be of great significance to human health. Large spatiotemporal heterogeneity of indoor air pollution can be hardly captured by conventional filter-based monitoring but real-time monitoring. Real-time monitoring is conducive to change air assessment mode from static and sparse analysis to dynamic and massive analysis, and has made remarkable strides in indoor air evaluation. In this review, the state of art, strengths, challenges, and further development of real-time sensors used in indoor air evaluation are focused on. Researches using real-time sensors for indoor air evaluation have increased rapidly since 2018, and are mainly conducted in China and the USA, with the most frequently investigated air pollutants of PM2.5. In addition to high spatiotemporal resolution, real-time sensors for indoor air evaluation have prominent advantages in 3-dimensional monitoring, pollution peak and source identification, and short-term health effect evaluation. Huge amounts of data from real-time sensors also facilitate the modeling and prediction of indoor air pollution. However, challenges still remain in extensive deployment of real-time sensors indoors, including the selection, performance, stability, as well as calibration of sensors. In future, sensors with high performance, long-term stability, low price, and low energy consumption are welcomed. Furthermore, more target air pollutants are also expected to be detected simultaneously by real-time sensors in indoor air monitoring.

What counts? The critical role of qualitative data in teachers' decision making.

The push for data-based decision making in schools has largely centered on the use of quantitative data to inform technical-rational processes of teachers' decision making. Previous attention to teachers' reliance on qualitative data - particularly unsystematically collected qualitative data - tends to focus on their use of intuition and is often characterized as a counter to evidence based inquiry. Limited research, however, has been conducted to understand how teachers actually apply available data within their classrooms, the factors that shape teachers' decision making, or what they consider credible in assessing their students' progress and achievement. In this collective case study, 15 teachers from three high schools discuss how they exercise professional judgment and make instructional decisions based on qualitative evidence. It takes an intentionally grounded approach to exploring the many data points that teachers draw upon as they face decision moments in their daily practice. In interviews and observations over the course of one school year, teachers describe various types of qualitative data that shed light on students' experiences as they undertake processes of learning. As these teachers glean bits and pieces of systematically and unsystematically collected qualitative data, including informal, undocumented data through conversations and observation, these data inspire reflective questioning and hypotheses about their instructional practice. While student progress should not be wholly assessed based on qualitative data, the findings show that we must acknowledge the inevitable and critical role these data play in guiding teachers' actions and informing their professional judgment. The persistent integration of qualitative data - though sometimes pointed to as a threat to rational decision-making processes - instead confirms a reliance upon them in guiding classroom instruction and a need to ensure their appropriate use.

Barriers to the digital transformation of infrastructure sectors.

Digital technologies can be important to policy-makers and public servants, as these technologies can increase infrastructure performance and reduce environmental impacts. For example, utilizing data from sensors in sewer systems can improve their management, which in turn may result in better surface water quality. Whether such big data from sensors is utilized is, however, not only a technical issue, but also depends on different types of social and institutional conditions. Our article identifies individual, organizational, and institutional barriers at the level of sub-states that hinder the evaluation of data from sewer systems. We employ fuzzy-set Qualitative Comparative Analysis (fsQCA) to compare 23 Swiss sub-states and find that two barriers at different levels can each hinder data evaluation on their own. More specifically, either a lack of vision at the individual level or a lack of resources at the organizational level hinder the evaluation of data. Findings suggest that taking into account different levels is crucial for understanding digital transformation in public organizations.

Using Electronic Medical Record Data for Research in a Healthcare Information and Management Systems Society (HIMSS) Analytics Electronic Medical Record Adoption Model (EMRAM) Stage 7 Hospital in Beijing: Cross-sectional Study.

BACKGROUND: With the proliferation of electronic medical record (EMR) systems, there is an increasing interest in utilizing EMR data for medical research; yet, there is no quantitative research on EMR data utilization for medical research purposes in China. OBJECTIVE: This study aimed to understand how and to what extent EMR data are utilized for medical research purposes in a Healthcare Information and Management Systems Society (HIMSS) Analytics Electronic Medical Record Adoption Model (EMRAM) Stage 7 hospital in Beijing, China. Obstacles and issues in the utilization of EMR data were also explored to provide a foundation for the improved utilization of such data. METHODS: For this descriptive cross-sectional study, cluster sampling from Xuanwu Hospital, one of two Stage 7 hospitals in Beijing, was conducted from 2016 to 2019. The utilization of EMR data was described as the number of requests, the proportion of requesters, and the frequency of requests per capita. Comparisons by year, professional title, and age were conducted by double-sided chi-square tests. RESULTS: From 2016 to 2019, EMR data utilization was poor, as the proportion of requesters was 5.8% and the frequency was 0.1 times per person per year. The frequency per capita gradually slowed and older senior-level staff more frequently used EMR data compared with younger staff. CONCLUSIONS: The value of using EMR data for research purposes is not well studied in China. More research is needed to quantify to what extent EMR data are utilized across all hospitals in Beijing and how these systems can enhance future studies. The results of this study also suggest that young doctors may be less exposed or have less reason to access such research methods.

Efficiency of fine scale and spatial regression in modelling associations between healthcare service spatial accessibility and their utilization.

BACKGROUND: Healthcare accessibility, a key public health issue, includes potential (spatial accessibility) and realized access (healthcare utilization) dimensions. Moreover, the assessment of healthcare service potential access and utilization should take into account the care provided by primary and secondary services. Previous studies on the relationship between healthcare spatial accessibility and utilization often used conventional statistical methods without addressing the scale effect and spatial processes. This study investigated the impact of spatial accessibility to primary and secondary healthcare services on length of hospital stay (LOS), and the efficiency of using a geospatial approach to model this relationship. METHODS: This study focused on the ≥ 75-year-old population of the Nord administrative region of France. Inpatient hospital spatial accessibility was computed with the E2SFCA method, and then the LOS was calculated from the French national hospital activity and patient discharge database. Ordinary least squares (OLS), spatial autoregressive (SAR), and geographically weighted regression (GWR) were used to analyse the relationship between LOS and spatial accessibility to inpatient hospital care and to three primary care service types (general practitioners, physiotherapists, and home-visiting nurses). Each model performance was assessed with measures of goodness of fit. Spatial statistical methods to reduce or eliminate spatial autocorrelation in the residuals were also explored. RESULTS: GWR performed best (highest R2 and lowest Akaike information criterion). Depending on global model (OLS and SAR), LOS was negatively associated with spatial accessibility to general practitioners and physiotherapists. GWR highlighted local patterns of spatial variation in LOS estimates. The distribution of areas in which LOS was positively or negatively associated with spatial accessibility varied when considering accessibility to general practitioners and physiotherapists. CONCLUSIONS: Our findings suggest that spatial regressions could be useful for analysing the relationship between healthcare spatial accessibility and utilization. In our case study, hospitalization of elderly people was shorter in areas with better accessibility to general practitioners and physiotherapists. This may be related to the presence of effective community healthcare services. GWR performed better than LOS and SAR. The identification by GWR of how these relationships vary spatially could bring important information for public healthcare policies, hospital decision-making, and healthcare resource allocation.

Child maltreatment data: A summary of progress, prospects and challenges.

BACKGROUND: In 1996, the ISPCAN Working Group on Child Maltreatment Data (ISPCAN-WGCMD) was established to provide an international forum in which individuals, who deal with child maltreatment data in their respective professional roles, can share concerns and solutions. OBJECTIVE: This commentary describes some of the key features and the status of child maltreatment related data collection addressed by the ISPCAN-WGCMD. METHODS: Different types of data collection methods including self-report, sentinel, and administrative data designs are described as well as how they address different needs for information to help understand child maltreatment and systems of prevention and intervention. RESULTS: While still lacking in many parts of the world, access to child maltreatment data has become much more widespread, and in many places a very sophisticated undertaking. CONCLUSION: The ISPCAN-WGCMD has been an important forum for supporting the continued development and improvement in the global effort to understand and combat child maltreatment thus contributing to the long term goals of the UN Convention on the Rights of the Child. Nevertheless, based on what has been learned, even greater efforts are required to improve data in order to effectively combat child maltreatment.

Using Innovation-Decision Model to Describe the Adoption to Utilization of HIV-Data for Decision-Making in LMICs.

Data informed decision-making (DIDM) plays a fundamental role in the fight against HIV and AIDS in Low-and-Middle-Income Countries (LMICs). Despite the scale-up of HIV care services, supported by health information systems (HIS), cases of under-utilization of data in decision-making are still being reported at different levels of the health system. Literature revealing the process involved in data users' decision to adopt DIDM in LMICs is meager. To fill this gap, we employ the innovation-decision model to describe the stages of adoption of DIDM by data users. Thus, we extract reports on efforts to promote DIDM in HIV from existing literature, and map this to the model. We then identify important stages, which require emphasis in the adoption process. Hence, implementers could benefit from use of the innovation-decision model in understanding adoption process of DIDM.

Medical imaging data in the digital innovation age.

As we reflect on decades of exponential advancements in electronic innovation, we can see the field of medical imaging eclipsed by a new digital landscape - one that is inexpensive, fast, and powerful. This new paradigm presents new opportunities to innovate in both research and clinical settings. In this article, we review the current role of data: the common perceptions around its valuation and the infrastructure currently in place for data-driven innovation. Looking forward, we consider what has already been achieved using modern data capacities, the opportunities we have for further expansion in this area, and the obstacles we will need to transcend.

Current concepts on hematopoietic stem cell transplantation outcome registries; Emphases on resource requirements for new registries.

There is tremendous variability in size, scope, and resource requirements for registries depending on the number of patients and participating sites. The outcome registries are organized systems to collect uniform data using an observational study methodology. Patient registries are used to determine specified outcomes for a population for predetermined scientific, clinical, or policy purposes. Historically, outcome registries established in the development of hematopoietic stem cell transplantation (HSCT) have now evolved into myriads of locoregional and international transplant activity and outcome resources. Over time, these registries have contributed immensely in determining trends, patterns, and treatment outcomes in HSCT. There is wider variation in the goals, mission, objectives, and outcomes of the ongoing registries depending on the organizational structure. There is a growing trend toward overarching relationship of these registries to serve as complementary and interoperable resources for high potential collaborative research. In addition to capacity building, standardized, accredited, and optimally operational registries can provide unmatched and unparalleled research data that cannot be obtained otherwise. Moving forward, HSCT data collection, collation, and interpretation should be an integral part of the treatment rather than an option. Quality assurance and continuous quality improvement of the data are pivotal for credibility, measurable/quantifiable outcomes, clinically significant impact, and setting new benchmarks.

Development and Application of Whole Process Medical Insurance Informatization Management / 医学信息学杂志

The paper introduces the application technology of whole process medical insurance informatization management in the Third Hospital Affiliated to Sun Yat-sen University,including how to implement the medical insurance information into the whole treatment process in real time,construct the medical insurance database suitable for the hospital and interface technology of medical insurance settlement,so as to lay foundation to achieve disease diagnosis related groups.

Clinical and economic outcomes among elderly myocardial infarction survivors in the United States.

OBJECTIVES: Longitudinal data are limited regarding outcomes and costs beyond 1 year after acute myocardial infarction (MI) among elderly (≥65 years old) US patients. This study examined long-term outcomes and healthcare costs among elderly MI survivors. METHODS: Retrospective analysis of 2002-2009 Medicare healthcare claims (5% random sample). Patients were ≥65 years old and survived ≥1 year without recurrent MI after MI hospitalization. Mortality, incidence of hospitalizations for stroke, major bleeding, MI, a composite endpoint (death, MI, or stroke), and nonpharmacy healthcare costs were determined. RESULTS: Eligible patients included 16 244 STEMI, 34 576 NSTEMI, and 3109 unspecified MI. NSTEMI and unspecified MI patients had significantly higher prevalence of comorbidities than STEMI patients, except for hypertension and dyslipidemia. MI incidence declined 36% over the follow-up (3.82/100 person-years [PY] to 2.45/100 PY). Mortality, stroke, and bleeding decreased until the third year of follow-up and then increased. NSTEMI and unspecified MI patients had a significantly higher incidence of death, MI, the composite, and bleeding than STEMI patients throughout follow-up. All-cause inpatient costs during follow-up were 2.6- and 1.9-fold higher than baseline for STEMI and NSTEMI, respectively; cardiovascular-related inpatient costs were 3.5- and 2.2-fold higher, respectively. CONCLUSIONS: Risks of mortality and cardiovascular events remain high in a Medicare population surviving >1 year after a MI. Continuing healthcare costs are doubled over pre-MI levels up to 5 years after an MI. Secondary prevention measures beyond the acute post-MI period may be indicated to reduce risk and cost in this chronic disease phase.

How to do (or not to do) translation of national health accounts data to evidence for policy making in a low resourced setting.

For more than a decade, the Organization for Economic Co-operation and Development (OECD), the World Health Organization (WHO) and the World Bank have promoted the international standardization of National Health Accounts (NHA) for reporting global statistics on public, private and donor health expenditure and improve the quality of evidence-based decision-making at country level. A 2010-2012 World Bank review of NHA activity in 50 countries found structural and technical constraints (rather than cost) were key impediments to institutionalizing NHA in many low- and middle-income countries (LMICs). Pilot projects focused resources on data production, neglecting longer-term capacity building for analysing the data, developing ownership among local stakeholders and establishing routine production, utilization and dissemination of NHA data. Hence, genuine institutionalization of NHA in most LMICs has been slow to materialize. International manuals focus on the production of NHA data and do not include practical, incremental and low-cost strategies to guide countries in translating the data into evidence for policy-making. The main aim of this article is to recommend strategies for bridging this divide between production and utilization of NHA data in low-resource settings. The article begins by discussing the origins and purpose of NHA, including factors currently undermining their uptake. The focus then turns to the development and application of strategies to assist LMICs in 'unlocking' the hidden value of their NHA. The article draws on the example of Fiji, a country currently attempting to integrate their NHA data into policy formulation, despite minimal resources, training and familiarity with economic analysis of health systems. Simple, low cost recommendations such as embedding health finance indicators in planning documents, a user-friendly NHA guide for evaluating local health priorities, and sharing NHA data for collaborative research have helped translate NHA from raw data to evidence for policymaking.

Novel microsatellite marker development from the unassembled genome sequence data of the marbled flounder Pseudopleuronectes yokohamae.

Various genome-scale data have been increasingly published in diverged species, but they can be reused for other purposes by re-analyzing in other ways. As a case study to utilize the published genome data, we developed microsatellite markers from the genome sequence data (assembled contigs and unassembled reads) of the marbled flounder Pseudopleuronectes yokohamae. No microsatellites were identified in the contig sequences, whereas the computer software found 781,773 sequences containing microsatellites with di- to hexa-nucleotide motif in the unassembled reads. For 86,732 unique sequences among them, a total of 331,368 primer pairs were designed. Screening based on PCR amplification, polymorphisms and accurate genotyping resulted in sixteen primer sets, which were later characterized using 45 samples collected in Onagawa Bay, Miyagi, Japan. The presence of null alleles was suggested at four loci in the studied population but no evidence of allelic dropout was found. The observed number of alleles and heterozygosity was 2-20 and 0-0.88889, respectively, indicating polymorphisms and usefulness for population genetic analyses of this species. In addition, a large number of the microsatellite primers developed in this study are potentially applicable also for kinship estimation, individual fingerprint and linkage map construction.

Factors contributing to suboptimal vaccination against influenza: results of a nationwide telephone survey of persons with cardiovascular disease.

Vaccination against influenza averts cardiovascular events and is recommended for all patients with coronary heart disease. Because data were unavailable regarding vaccination rates among such patients' household contacts, we sought to estimate the rate of influenza vaccination in persons with cardiovascular disease and their contacts. In 2004, we conducted a random, nationwide telephone survey of 1,202 adults (age, > or = 18 yr) to ascertain knowledge, attitudes, and behaviors regarding influenza vaccination. Of the interviewees, 134 (11.1%) had histories of heart disease or stroke. Of these 134, 57% were men, and 45% were > or = 65 years of age. Overall, 57% were inoculated against influenza in 2003-2004, and 68% intended the same during 2004-2005. Vaccination rates increased with age: 48% (ages, 18-49 yr), 68% (ages, 50-64 yr), and 75% (age, > or = 65 yr). Forty of 69 respondents (58%) reported that their spouses were vaccinated, and 7 of 21 (33%) reported the inoculation of children < or = 17 years old in their household. Only 65% of the 134 patients considered themselves to be of high-risk status. Chief reasons for remaining unvaccinated were disbelief in being at risk and fear of contracting influenza from the vaccine. Although seasonal influenza vaccination is recommended for all coronary heart disease patients and their household contacts, the practice is less prevalent than is optimal. Intensified approaches are needed to increase vaccination rates. These findings suggest a need to increase vaccination efforts in high-risk subjects, particularly amidst the emerging H1N1 pandemic.