A Governance Framework to Integrate Longitudinal Clinical and Community Data in a Distributed Data Network: The Childhood Obesity Data Initiative.

CONTEXT: Integrating longitudinal data from community-based organizations (eg, physical activity programs) with electronic health record information can improve capacity for childhood obesity research. OBJECTIVE: A governance framework that protects individual privacy, accommodates organizational data stewardship requirements, and complies with laws and regulations was developed and implemented to support the harmonization of data from disparate clinical and community information systems. PARTICIPANTS AND SETTING: Through the Childhood Obesity Data Initiative (CODI), 5 Colorado-based organizations collaborated to expand an existing distributed health data network (DHDN) to include community-generated data and assemble longitudinal patient records for research. DESIGN: A governance work group expanded an existing DHDN governance infrastructure with CODI-specific data use and exchange policies and procedures that were codified in a governance plan and a delegated-authority, multiparty, reciprocal agreement. RESULTS: A CODI governance work group met from January 2019 to March 2020 to conceive an approach, develop documentation, and coordinate activities. Governance requirements were synthesized from the CODI use case, and a customized governance approach was constructed to address governance gaps in record linkage, a procedure to request data, and harmonizing community and clinical data. A Master Sharing and Use Agreement (MSUA) and Memorandum of Understanding were drafted and executed to support creation of linked longitudinal records of clinical- and community-derived childhood obesity data. Furthermore, a multiparty infrastructure protocol was approved by the local institutional review board (IRB) to expedite future CODI research by simplifying IRB research applications. CONCLUSION: CODI implemented a clinical-community governance strategy that built trust between organizations and allowed efficient data exchange within a DHDN. A thorough discovery process allowed CODI stakeholders to assess governance capacity and reveal regulatory and organizational obstacles so that the governance infrastructure could effectively leverage existing knowledge and address challenges. The MSUA and complementary governance documents can inform similar efforts.

The Childhood Obesity Data Initiative: A Case Study in Implementing Clinical-Community Infrastructure Enhancements to Support Health Services Research and Public Health.

CONTEXT: We describe a participatory framework that enhanced and implemented innovative changes to an existing distributed health data network (DHDN) infrastructure to support linkage across sectors and systems. Our processes and lessons learned provide a potential framework for other multidisciplinary infrastructure development projects that engage in a participatory decision-making process. PROGRAM: The Childhood Obesity Data Initiative (CODI) provides a potential framework for local and national stakeholders with public health, clinical, health services research, community intervention, and information technology expertise to collaboratively develop a DHDN infrastructure that enhances data capacity for patient-centered outcomes research and public health surveillance. CODI utilizes a participatory approach to guide decision making among clinical and community partners. IMPLEMENTATION: CODI's multidisciplinary group of public health and clinical scientists and information technology experts collectively defined key components of CODI's infrastructure and selected and enhanced existing tools and data models. We conducted a pilot implementation with 3 health care systems and 2 community partners in the greater Denver Metro Area during 2018-2020. EVALUATION: We developed an evaluation plan based primarily on the Good Evaluation Practice in Health Informatics guideline. An independent third party implemented the evaluation plan for the CODI development phase by conducting interviews to identify lessons learned from the participatory decision-making processes. DISCUSSION: We demonstrate the feasibility of rapid innovation based upon an iterative and collaborative process and existing infrastructure. Collaborative engagement of stakeholders early and iteratively was critical to ensure a common understanding of the research and project objectives, current state of technological capacity, intended use, and the desired future state of CODI architecture. Integration of community partners' data with clinical data may require the use of a trusted third party's infrastructure. Lessons learned from our process may help others develop or improve similar DHDNs.

Simultaneous Kinematic and Contact Force Modeling of a Human Finger Tendon System Using Bond Graphs and Robotic Validation.

This paper aims to use bond graph modeling to create the most comprehensive finger tendon model and simulation to date. Current models are limited to either free motion without external contact or fixed finger force transmission between tendons and fingertip. The forward dynamics model, presented in this work, simultaneously simulates the kinematics of tendon-finger motion and contact forces of a central finger given finger tendon inputs. The model equations derived from bond graphs are accompanied by nonlinear relationships modeling the anatomical complexities of moment arms, tendon slacking, and joint range of motion (ROM). The structure of the model is validated using a robotic testbed, Utah's Anatomically correct Robotic Testbed (UART) finger. Experimental motion of the UART finger during free motion (no external contact) and surface contact are simulated using the bond graph model. The contact forces during the surface contact experiments are also simulated. On average, the model was able to predict the steady-state pose of the finger with joint angle errors less than 6 deg across both free motion and surface contact experiments. The static contact forces were accurately predicted with an average of 11.5% force magnitude error and average direction error of 12 deg.

A Community Health Record: Improving Health Through Multisector Collaboration, Information Sharing, and Technology.

We present a framework for developing a community health record to bring stakeholders, information, and technology together to collectively improve the health of a community. It is both social and technical in nature and presents an iterative and participatory process for achieving multisector collaboration and information sharing. It proposes a methodology and infrastructure for bringing multisector stakeholders and their information together to inform, target, monitor, and evaluate community health initiatives. The community health record is defined as both the proposed framework and a tool or system for integrating and transforming multisector data into actionable information. It is informed by the electronic health record, personal health record, and County Health Ranking systems but differs in its social complexity, communal ownership, and provision of information to multisector partners at scales ranging from address to zip code.

Using Real-World Electronic Health Record Data to Assess Chronic Disease Screening in Children: A Case Study of Non-Alcoholic Fatty Liver Disease.

Background: Data sources for assessing pediatric chronic diseases and associated screening practices are rare. One example is non-alcoholic fatty liver disease (NAFLD), a common chronic liver disease prevalent among children with overweight and obesity. If undetected, NAFLD can cause liver damage. Guidelines recommend screening for NAFLD using alanine aminotransferase (ALT) tests in children ≥9 years with obesity or those with overweight and cardiometabolic risk factors. This study explores how real-world data from electronic health records (EHRs) can be used to study NAFLD screening and ALT elevation. Research Design: Using IQVIA's Ambulatory Electronic Medical Record database, we studied patients 2-19 years of age with body mass index ≥85th percentile. Using a 3-year observation period (January 1, 2019 to December 31, 2021), ALT results were extracted and assessed for elevation (≥1 ALT result ≥22.1 U/L for females and ≥25.8 U/L for males). Patients with liver disease (including NAFLD) or receiving hepatotoxic medications during 2017-2018 were excluded. Results: Among 919,203 patients 9-19 years of age, only 13% had ≥1 ALT result, including 14% of patients with obesity and 17% of patients with severe obesity. ALT results were identified for 5% of patients 2-8 years of age. Of patients with ALT results, 34% of patients 2-8 years of age and 38% of patients 9-19 years of age had ALT elevation. Males 9-19 years of age had a higher prevalence of ALT elevation than females (49% vs. 29%). Conclusions: EHR data offered novel insights into NAFLD screening: despite screening recommendations, ALT results among children with excess weight were infrequent. Among those with ALT results, ALT elevation was common, underscoring the importance of screening for early disease detection.

The Relation of Adiposity Rebound to Subsequent BMI in a Large Electronic Health Record Database.

Objective: The beginning of postinfancy increase in BMI has been termed the adiposity rebound, and an early rebound increases the risk for obesity in adolescence and adulthood. We examined whether the relation of the age at BMI rebound (agerebound) to subsequent BMI is independent of childhood BMI. Design: From the electronic health records of 2.8 million children, we selected 17,077 children examined at least once each year between ages 2 and <8 years, and who were reexamined between age 10 and <16 years. The mean age at the last visit was 12 years (SD = 1). We identified agerebound for each child using lowess, a smoothing technique. Results: Children who had an agerebound <3 years were, on average, 6.8 kg/m2 heavier after age 10 years than were children with an agerebound >7 years. However, BMI after age 10 years was more strongly associated with BMI at the rebound (BMIrebound) than with agerebound (r = 0.63 vs. -0.49). Although the relation of agerebound to BMI at the last visit was mostly independent of the BMIrebound, adjustment for age-5 BMI reduced the association's magnitude by about 55%. Conclusions: Both agerebound and the BMIrebound are independently related to BMI and obesity after age 10 years. However, a child's BMIrebound and at ages 5 and 7 years accounts for more of the variability in BMI levels after age 10 years than does agerebound.

Static Weight Perception Through Skin Stretch and Kinesthetic Information: Detection Thresholds, JNDs, and PSEs.

We examined the contributions of kinesthetic and skin stretch cues to static weight perception. In three psychophysical experiments, several aspects of static weight perception were assessed by asking participants either to detect on which hand a weight was presented or to compare between two weight cues. Two closed-loop controlled haptic devices were used to present cutaneous and kinesthetic weights, in isolation and together, with a precision of 0.05 g. Our results show that combining skin stretch and kinesthetic information leads to better weight detection thresholds than presenting uni-sensory cues does. For supra-threshold stimuli, Weber fractions were 22-44%. Kinesthetic information was less reliable for lighter weights, while both sources of information were equally reliable for weights up to 300 g. Weight was perceived as equally heavy regardless of whether skin stretch and kinesthetic cues were presented together or alone. Data for lighter weights complied with an Optimal Integration model, while for heavier weights, measurements were closer to predictions from a Sensory Capture model. The presence of correlated noise might explain this discrepancy, since that would shift predictions from the Optimal Integration model towards our measurements. Our experiments provide device-independent perceptual measures, and can be used to inform, for instance, skin stretch device design.

The Longitudinal Relation of Childhood Height to Subsequent Obesity in a Large Electronic Health Record Database.

OBJECTIVE: Several cross-sectional studies have shown that height in childhood is correlated with BMI and with body fatness, and two longitudinal studies have reported that childhood height is associated with adult BMI. This study explored this longitudinal association in an electronic health record database of 2.8 million children. METHODS: Children were initially examined between the ages of 2 and 13.9 years and, on average, were reexamined 4 years later. RESULTS: As expected, there was a cross-sectional correlation between height-for-age z score and BMI that increased from r = -0.06 (age of 2 years) to r = 0.37 (age of 9-10 years). In addition, height-for-age at the first visit was related to subsequent BMI and obesity, with the prevalence of subsequent obesity increasing about fourfold over six categories of height-for-age at the first visit. About 40% of this longitudinal association was independent of initial BMI, but its magnitude decreased with initial age. For example, the initial height-for-age of children who were 12 years of age or older was only weakly associated with subsequent BMI. CONCLUSIONS: Health professionals should recognize that greater childhood height-for-age before 12 years of age may be a marker for increased risk of subsequent obesity.

Tracking of obesity among 2- to 9-year-olds in an electronic heath record database from 2006 to 2018.

BACKGROUND AND OBJECTIVE: As obesity among children and adolescents is associated with major health risks, including the persistence of obesity into adulthood, there has been interest in targeting prevention efforts at children and adolescent. The longitudinal tracking of BMI and obesity, as well as the effects of initial age and duration of follow-up on this tracking, were examined in a large electronic health record (EHR) database. METHODS: The data consisted of 2.04 million children who were examined from 2006 through 2018. These children were initially examined between ages 2 and 9 years and had a final examination, on average, 4 years later. RESULTS: Overall, children with obesity at one examination were 7.7 times more likely to have obesity at a subsequent examination than children with a BMI ≤ 95th percentile. Further, 71% of children with obesity at one examination continued to have obesity at re-examination. Although 2-year-olds had a relative risk of 5.5 and a positive predictive value of 54%, then sensitivity of obesity at younger ages was low. Of the children who were re-examined after age 10 y and found to have obesity, only 22% had a BMI ≥ 95th percentile at age 2 years. CONCLUSIONS: Despite the tracking of obesity at all ages, these results agree with previous reports that have found that an elevated BMI at a very young age will identify only a small proportion of older children with obesity.

National Burden of Heart Failure Events in the United States, 2006 to 2014.

BACKGROUND: Heart failure (HF)-a serious and costly condition-is increasingly prevalent. We estimated the US burden including emergency department (ED) visits, inpatient hospitalizations and associated costs, and mortality. METHODS AND RESULTS: We analyzed 2006 to 2014 data from the Healthcare Cost and Utilization Project Nationwide Emergency Department Sample, the Healthcare Cost and Utilization Project National (nationwide) Inpatient Sample, and the National Vital Statistics System. International Classification of Disease codes identified HF and comorbidities. Burden was estimated separately for ED visits, hospitalizations, and mortality. In addition, criteria were applied to identify total unique acute events. Rates of primary HF (primary diagnosis or underlying cause of death) and comorbid HF (comorbid diagnosis or contributing cause of death) were calculated, age standardized to the 2010 US population. In 2014, there were an estimated 1 068 412 ED visits, 978 135 hospitalizations, and 83 705 deaths with primary HF. There were 4 071 546 ED visits, 3 370 856 hospitalizations, and 230 963 deaths with comorbid HF. Between 2006 and 2014, the total unique acute event rate for primary HF declined from 536 to 449 per 100 000 (relative percent change of -16%; P for trend, <0.001) but increased for comorbid HF from 1467 to 1689 per 100 000 (relative percentage change, 15%; P for trend, <0.001). HF-related mortality decreased significantly from 2006 to 2009 but did not change meaningfully after 2009. For hospitalizations with primary HF, the estimated mean cost was $11 552 in 2014, totaling an estimated $11 billion. CONCLUSIONS: Given substantial healthcare and mortality burden of HF, rising healthcare costs, and the aging US population, continued improvements in HF prevention, management, and surveillance are important.

Land cover variation and West Nile virus prevalence: patterns, processes, and implications for disease control.

Identifying links between environmental variables and infectious disease risk is essential to understanding how human-induced environmental changes will effect the dynamics of human and wildlife diseases. Although land cover change has often been tied to spatial variation in disease occurrence, the underlying factors driving the correlations are often unknown, limiting the applicability of these results for disease prevention and control. In this study, we described associations between land cover composition and West Nile virus (WNV) infection prevalence, and investigated three potential processes accounting for observed patterns: (1) variation in vector density; (2) variation in amplification host abundance; and (3) variation in host community composition. Interestingly, we found that WNV infection rates among Culex mosquitoes declined with increasing wetland cover, but wetland area was not significantly associated with either vector density or amplification host abundance. By contrast, wetland area was strongly correlated with host community composition, and model comparisons suggested that this factor accounted, at least partially, for the observed effect of wetland area on WNV infection risk. Our results suggest that preserving large wetland areas, and by extension, intact wetland bird communities, may represent a valuable ecosystem-based approach for controlling WNV outbreaks.

Avian diversity and West Nile virus: testing associations between biodiversity and infectious disease risk.

The emergence of several high profile infectious diseases in recent years has focused attention on our need to understand the ecological factors contributing to the spread of infectious diseases. West Nile virus (WNV) is a mosquito-borne zoonotic disease that was first detected in the United States in 1999. The factors accounting for variation in the prevalence of WNV are poorly understood, but recentideas suggesting links between high biodiversity and reduced vector-borne disease risk may help account for distribution patterns of this disease. Since wild birds are the primary reservoir hosts for WNV, we tested associations between passerine (Passeriform) bird diversity, non-passerine (all other orders) bird diversity and virus infection rates in mosquitoes and humans to examine the extent to which bird diversity is associated with WNV infection risk. We found t h at non-passerine species richness (number of non-passerine species) was significantly negatively correlated with both mosquito and human infection rates, whereas there was no significant association between passerine species richness and any measure of infection risk. Our findings suggest that non-passerine diversity may play a role in dampening WNV amplification rates in mosquitoes, minimizing human disease risk.

Ecology of potential West Nile virus vectors in Southeastern Louisiana: enzootic transmission in the relative absence of Culex quinquefasciatus.

A study of West Nile virus (WNV) ecology was conducted in St. Tammany Parish, Louisiana, from 2002 to 2004. Mosquitoes were collected weekly throughout the year using Centers for Disease Control and Prevention (CDC) light traps placed at 1.5 and 6 m above the ground and gravid traps. A total of 379,466 mosquitoes was collected. WNV was identified in 32 pools of mosquitoes comprising four species; 23 positive pools were from Culex nigripalpus collected during 2003. Significantly more positive pools were obtained from Cx. nigripalpus collected in traps placed at 6 m than 1.5 m that year, but abundance did not differ by trap height. In contrast, Cx. nigripalpus abundance was significantly greater in traps placed at 6 m in 2002 and 2004. Annual temporal variation in Cx. nigripalpus peak seasonal abundance has important implications for WNV transmission in Louisiana. One WNV-positive pool, from Cx. erraticus, was collected during the winter of 2004, showing year-round transmission. The potential roles of additional mosquito species in WNV transmission in southeastern Louisiana are discussed.

Triatoma dimidiata infestation in Chagas disease endemic regions of Guatemala: comparison of random and targeted cross-sectional surveys.

BACKGROUND: Guatemala is presently engaged in the Central America Initiative to interrupt Chagas disease transmission by reducing intradomiciliary prevalence of Triatoma dimidiata, using targeted cross-sectional surveys to direct control measures to villages exceeding the 5% control threshold. The use of targeted surveys to guide disease control programs has not been evaluated. Here, we compare the findings from the targeted surveys to concurrent random cross-sectional surveys in two primary foci of Chagas disease transmission in central and southeastern Guatemala. METHODOLOGY/PRINCIPAL FINDINGS: Survey prevalences of T. dimidiata intradomiciliary infestation by village and region were compared. Univariate logistic regression was used to assess the use of risk factors to target surveys and to evaluate indicators associated with village level intradomiciliary prevalences >5% by survey and region. Multivariate logistic regression models were developed to assess the ability of random and targeted surveys to target villages with intradomiciliary prevalence exceeding the control threshold within each region. Regional prevalences did not vary by survey; however, village prevalences were significantly greater in random surveys in central (13.0% versus 8.7%) and southeastern (22.7% versus 6.9%) Guatemala. The number of significant risk factors detected did not vary by survey in central Guatemala but differed considerably in the southeast with a greater number of significant risk factors in the random survey (e.g. land surface temperature, relative humidity, cropland, grassland, tile flooring, and stick and mud and palm and straw walls). Differences in the direction of risk factor associations were observed between regions in both survey types. The overall discriminative capacity was significantly greater in the random surveys in central and southeastern Guatemala, with an area under the receiver-operator curve (AUC) of 0.84 in the random surveys and approximately 0.64 in the targeted surveys in both regions. Sensitivity did not differ between surveys, but the positive predictive value was significantly greater in the random surveys. CONCLUSIONS/SIGNIFICANCE: Surprisingly, targeted surveys were not more effective at determining T. dimidiata prevalence or at directing control to high risk villages in comparison to random surveys. We recommend that random surveys should be selected over targeted surveys whenever possible, particularly when the focus is on directing disease control and elimination and when risk factor association has not been evaluated for all regions under investigation.

Predicting geographic variation in cutaneous leishmaniasis, Colombia.

Approximately 6,000 cases of cutaneous leishmaniasis are reported annually in Colombia, a greater than twofold increase since the 1980s. Such reports certainly underestimate true incidence, and their geographic distribution is likely biased by local health service effectiveness. We investigated how well freely available environmental data explain the distribution of cases among 1,079 municipalities. For each municipality, a unique predictive logistic regression model was derived from the association among remaining municipalities between elevation, land cover (preclassified maps derived from satellite images), or both, and the odds of at least one case being reported. Land cover had greater predictive power than elevation; using both datasets improved accuracy. Fitting separate models to different ecologic zones, reflecting transmission cycle diversity, enhanced the accuracy of predictions. We derived measures that can be directly related to disease control decisions and show how results can vary, depending on the threshold selected for predicting a disease-positive municipality. The results identify areas where disease is most likely to be underreported.