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PubMed2026

Identification Matters: How Data Sharing Affects Pupil Honesty and Engagement in Universal School Well-Being Assessments.

PURPOSE: Universal well-being assessments in schools may support early identification of pupils needing mental health support. However, little is known about how privacy and confidentiality concerns influence pupils' acceptability of assessments and willingness to engage authentically. This study examined how hypothetical identification, where responses are linked to pupils and shared with key stakeholders, affects pupils' anticipated honesty and engagement, and whether known help-seeking barriers predict negative responses. METHODS: Cross-sectional data were collected from 12,377 primary (ages 8-10) and secondary pupils (ages 11-17) across 55 schools in England. Pupils reported whether their responses would change if identifiable and shared with school staff, parents/guardians, or external professionals. Responses indicating reduced honesty or likelihood of disengagement were coded as negative. Predictors were examined using mixed-effects logistic regression models, including demographics, school connectedness, and mental well-being. RESULTS: Identification and data sharing influenced pupils' anticipated engagement, particularly in secondary schools. Identification by school staff elicited the highest proportion of negative responses in both phases, whereas external professionals elicited the fewest. Most primary pupils reported they would respond authentically, while a larger proportion of secondary pupils indicated they would respond less honestly or disengage when responses were identifiable and shared. Across primary and secondary samples, low well-being, low school connectedness, and being female were associated with greater likelihood of negative response. DISCUSSION: Pupils' anticipated engagement with well-being assessments is shaped by who accesses their data, with marked developmental differences. Strengthening trust, privacy, and connectedness, and supporting pupils' autonomy, may improve the acceptability and response accuracy.

Humans↗
PubMed1992

Integrating Radiology and Hospital Information Systems: the advantage of shared data.

Information management is central to modern patient care. Computerization of information management has resulted in both departmental systems which serve information needs in locations such as the Radiology Department and in hospital-wide information systems which seek to integrate management of clinical data from many departments. For each of these systems to achieve the goal of maximizing both the effectiveness of health care workers and the quality of patient care, they need to share the data that they capture. Below we discuss a variety of applications, both currently available and in the realm of research protocols, that depend on a high level of communication between Radiology Information Systems and Hospital Information Systems. These examples suggest the benefits of integrating the medically relevant data collected by all of the computer-based information systems in the hospital setting.

Decision Making, Computer-Assisted↗
PubMed2001

Risk factors for renal allograft survival from pediatric cadaver donors: an analysis of united network for organ sharing data.

BACKGROUND: The shortage of cadaveric donors for kidney transplantation has prompted many centers to use cadaver kidneys from pediatric donors. Use of kidneys from pediatric donors has been shown to have a lower graft survival. METHODS: Recipients receiving cadaver kidneys from pediatric and adult donors between 1988 and 1995 were analyzed. The data were obtained from United Network of Organ Sharing database. The actuarial kidney transplant graft survival was estimated by the Kaplan-Meier method. A logistic regression analysis was used to identify various risk factors for 1-year graft failure. Odds ratios (OR) were estimated for various risk factors. RESULTS: Kidney transplant survival rates for donor age <18 years (n=12,838) at 1, 2, 3, 4, and 5 years were 81.5%, 76.3%, 71.3%, 66.4%, and 61.7%, respectively. The corresponding results for adult donors from age 18 to 50 years (n=35, 442) were 83.5%, 78.4%, 73.1%, 67.9%, and 62.4%, respectively, Log-rank test P<0.01. Pediatric donors were further divided into three groups according to donor age: group I (0-5 years), group II (6-11 years), and group III (12-17 years). The actuarial survival rates for 1, 3, and 5 years for group I (n=2198) were 73.6%, 63.3%, and 55.6%, respectively. The corresponding values for group II (n=2873) were 78.0%, 67.5%, and 57.8% and for group III (n=7767) were 85%, 75.0%, and 64.8%, respectively, P<0.01. Although the recipients of group I had lower graft survival, en bloc grafts (n=751) had much better 1-, 3-, and 5-year graft survival rates (76.3%, 67.7%, and 60.7%, respectively) compared with single grafts (n=1447; 72.2%, 61.1%, and 53.2%, P=0.02) from donors 0 to 5 years. Graft thrombosis as a cause of graft failure was seen in 10% of group I compared with 6% in group II and 5% in group III. In group I, lower OR were seen when an en bloc transplant was performed (0.688, P<0.01) and when donor body weight was>15 kg (0.547, P<0.01). However, OR were elevated in recipients of previous transplants (1.556, P<0.01), with prolonged cold ischemic time (1.097, P=0.03), for black recipients (1.288, P=0.03), and for recipients with body mass index> or =25 (1.286, P=0.02). Progressive increase in the donor age was associated with lower OR in group II (0.894, P<0.01). CONCLUSIONS: (1) Overall, poorer graft survival was seen in pediatric donor transplants, (2) transplant kidney survival with en bloc kidneys was better than a single kidney from donors 0-5 years, (3) progressive increase in donor age was associated with improved graft survival when the donors were 6-11 years, whereas progressive increase in donor weight was associated with improved graft survival when the donors were 0-5 years.

Adolescent↗
PubMed2004

Integration challenges of clinical information systems developed without a shared data dictionary.

Legacy systems have proven to be long-term integration challenges for Intermountain Health Care (IHC) despite commitment and attention to share clinical information across settings and among clinicians. This study measures the extent of the disparity of data elements across three independent data systems in current use. A sample of relevant data elements was selected across systems covering prenatal, labor and delivery, and newborn intensive care units (NICU). The findings revealed only 17% of these sample data elements had compatible structure across all three systems. The implications from differences in granularity, missing data, and duplicate data entry, include diminished data quality, greater risk for medical error, increased costs of integration and inefficient use of clinician time. Retrospective guidelines for managing conceptual context and granularity are given to assist in designing an integrated longitudinal patient electronic medical record.

Delivery of Health Care, Integrated↗
PubMed2001

EMR to the rescue. An ambulatory care pilot project shows that data sharing equals cost shaving.

PROBLEM: Inefficiencies in managing office practices and costs. SOLUTION: Installation of an EMR in ambulatory practices to integrate clinical data from patient visits and use it to improve efficiencies "downstream". RESULTS: Marked reduction in costs of ambulatory practice management and major improvements in revenue capture, improved patient satisfaction. KEYS TO SUCCESS: Analysis of workflow, documentation of progress with benchmarking.

Academic Medical Centers↗
PubMed2006

An experience of microbiological data sharing.

OBJECTIVES: The control of infections and their resistance to antibiotics in hospitals is a matter of vital importance in the follow-up of transplant patients. This project has the purpose of translating microbiological reports from an obsolete file structure to a system which could guarantee a more correct and quick transmission of data, a system of storage which reduces the possibility of errors, a smoother manipulation, consultation and updating of data and, at least, a simple way to compute the cost of analysis, based on the costs determined by the national's DRG. METHODS: The proposed solution is a semiautomatic interface which translates these data into a relational database on a daily basis, interprets the requests coming from external centers and produces reports. The prospective to use this tool for several centers indicates to us the need to choose an HL7 output for the interface. RESULTS: A prototype version of this program was installed in February 2004. In this period, routine work has been recorded with an average of 6.5 samples per day, with a maximum of 23 samples. Moreover, historical data from 1998 has been translated. The main source of errors in these data was due to patient identification problems with an average occurrence of 4.06% in the virology section and of 4.16% in the microbiological division. CONCLUSIONS: A complete reorganization of the system would be desirable but at the moment it is not realistic because of obvious budget problems. The proposed approach, mainly the HL7 interface, seems to be a reasonable compromise.

Cross Infection↗
PubMed2006

Multihospital surveillance of nosocomial methicillin-resistant Staphylococcus aureus, vancomycin-resistant enterococcus, and Clostridium difficile: analysis of a 4-year data-sharing project, 1999-2002.

BACKGROUND: This study sought to establish a benchmark of resistant organism rates among a cohort of regional hospitals. METHODS: The Centers for Disease Control and Prevention (CDC) definitions were used to standardize the methodology for obtaining rates per 1000 patient days of nosocomial infection and colonization with methicillin-resistant Staphylococcus aureus (MRSA) and vancomycin-resistant enterococcus (VRE), and nosocomial infection with Clostridium difficile (CDIF). Only newly acquired nosocomial cases were counted. Data were reported as individual hospital control charts and as cohorted aggregate data. VHA East Coast Infection Control Professionals from 32 hospitals in New Jersey and Pennsylvania were involved. RESULTS: Benchmarks were established with pooled mean rates for each cohort. During the observational period, a statistically significant downward trend was observed for VRE and MRSA (P = .02 and .0007, respectively), and an upward trend was observed for CDIF (P = .0256). CONCLUSION: Benchmarks were established to compare nosocomial MRSA, VRE, and CDIF rates. Although significant changes in rates were observed, no attempt was made to establish a causal relationship between infection control practices and observed rates. However, a secondary gain was achieved through sharing best practices.

Benchmarking↗
PubMed1996

Electronic referrals and data sharing: can it work for health care and social service providers?

The present system for referral of clients, particularly the elderly, to health care and social services providers is often fragmented, slowed by inaccurate or incomplete client information, and therefore less effective and perhaps more costly than it needs to be. A New York demonstration project is currently developing a computer-based information and referral system designed to streamline the referral process, provide client data to multiple agencies with only one admission interview, and offer instant access to selected agency data. Eighteen agencies are involved in the initial 2-year project; others will be invited to join once the system has been refined. Among the issues being addressed as the group creates the Community Information and Referral Access System (CIRAS) are client confidentiality, informed consent, participation guidelines, referral processes, and service definitions.

Computer Communication Networks↗
PubMed2026

ToxiVerse: chemical bioprofiling, toxicity data sharing and customizable predictive modeling.

MOTIVATION: Chemical toxicity assessment is critical for drug development and environmental safety. Computational models have emerged as a promising alternative to animal testing and now play a significant role in efficiently evaluating new chemicals. To address the urgent need for user-friendly machine learning tools in computational toxicology, we developed ToxiVerse, a public web-based platform. RESULTS: ToxiVerse provides automatic chemical bioprofiling, curated toxicity datasets, and a predictive modeling interface designed for researchers who lack programming expertise. The platform comprises three integrated modules: (i) Bioprofiler, which provides chemical descriptors by combining chemical-bioactivity data from PubChem assays with a machine learning-based data gap-filling procedure; (ii) Database, which hosts &#x223c;50&#x2009;000 curated chemicals covering diverse toxicity endpoints; and (iii) Cheminformatics, which enables dataset upload, chemical curation, and automatic generation of quantitative structure-activity relationship models for toxicity prediction. AVAILABILITY: The tool is accessible at www.toxiverse.com, and source code is available at https://github.com/zhu-research-group/toxiverse.

Quantitative Structure-Activity Relationship↗