Perspective on the Development of a Large-Scale Clinical Data Repository for Pediatric Hearing Research.

The use of "big data" for pediatric hearing research requires new approaches to both data collection and research methods. The widespread deployment of electronic health record systems creates new opportunities and corresponding challenges in the secondary use of large volumes of audiological and medical data. Opportunities include cost-effective hypothesis generation, rapid cohort expansion for rare conditions, and observational studies based on sample sizes in the thousands to tens of thousands. Challenges include finding and forming appropriately skilled teams, access to data, data quality assessment, and engagement with a research community new to big data. The authors share their experience and perspective on the work required to build and validate a pediatric hearing research database that integrates clinical data for over 185,000 patients from the electronic health record systems of three major academic medical centers.

Predicting Causes of Data Quality Issues in a Clinical Data Research Network.

Clinical data research networks (CDRNs) invest substantially in identifying and investigating data quality problems. While identification is largely automated, the investigation and resolution are carried out manually at individual institutions. In the PEDSnet CDRN, we found that only approximately 35% of the identified data quality issues are resolvable as they are caused by errors in the extract-transform-load (ETL) code. Nonetheless, with no prior knowledge of issue causes, partner institutions end up spending significant time investigating issues that represent either inherent data characteristics or false alarms. This work investigates whether the causes (ETL, Characteristic, or False alarm) can be predicted before spending time investigating issues. We trained a classifier on the metadata from 10,281 real-world data quality issues, and achieved a cause prediction F1-measure of up to 90%. While initially tested on PEDSnet, the proposed methodology is applicable to other CDRNs facing similar bottlenecks in handling data quality results.

A longitudinal analysis of data quality in a large pediatric data research network.

OBJECTIVE: PEDSnet is a clinical data research network (CDRN) that aggregates electronic health record data from multiple children's hospitals to enable large-scale research. Assessing data quality to ensure suitability for conducting research is a key requirement in PEDSnet. This study presents a range of data quality issues identified over a period of 18 months and interprets them to evaluate the research capacity of PEDSnet. MATERIALS AND METHODS: Results were generated by a semiautomated data quality assessment workflow. Two investigators reviewed programmatic data quality issues and conducted discussions with the data partners' extract-transform-load analysts to determine the cause for each issue. RESULTS: The results include a longitudinal summary of 2182 data quality issues identified across 9 data submission cycles. The metadata from the most recent cycle includes annotations for 850 issues: most frequent types, including missing data (>300) and outliers (>100); most complex domains, including medications (>160) and lab measurements (>140); and primary causes, including source data characteristics (83%) and extract-transform-load errors (9%). DISCUSSION: The longitudinal findings demonstrate the network's evolution from identifying difficulties with aligning the data to a common data model to learning norms in clinical pediatrics and determining research capability. CONCLUSION: While data quality is recognized as a critical aspect in establishing and utilizing a CDRN, the findings from data quality assessments are largely unpublished. This paper presents a real-world account of studying and interpreting data quality findings in a pediatric CDRN, and the lessons learned could be used by other CDRNs.

Harvest: an open platform for developing web-based biomedical data discovery and reporting applications.

Biomedical researchers share a common challenge of making complex data understandable and accessible as they seek inherent relationships between attributes in disparate data types. Data discovery in this context is limited by a lack of query systems that efficiently show relationships between individual variables, but without the need to navigate underlying data models. We have addressed this need by developing Harvest, an open-source framework of modular components, and using it for the rapid development and deployment of custom data discovery software applications. Harvest incorporates visualizations of highly dimensional data in a web-based interface that promotes rapid exploration and export of any type of biomedical information, without exposing researchers to underlying data models. We evaluated Harvest with two cases: clinical data from pediatric cardiology and demonstration data from the OpenMRS project. Harvest's architecture and public open-source code offer a set of rapid application development tools to build data discovery applications for domain-specific biomedical data repositories. All resources, including the OpenMRS demonstration, can be found at http://harvest.research.chop.edu.

Harvest: a web-based biomedical data discovery and reporting application development platform.

Biomedical researchers share a common challenge of making complex data understandable and accessible. This need is increasingly acute as investigators seek opportunities for discovery amidst an exponential growth in the volume and complexity of laboratory and clinical data. To address this need, we developed Harvest, an open source framework that provides a set of modular components to aid the rapid development and deployment of custom data discovery software applications. Harvest incorporates visual representations of multidimensional data types in an intuitive, web-based interface that promotes a real-time, iterative approach to exploring complex clinical and experimental data. The Harvest architecture capitalizes on standards-based, open source technologies to address multiple functional needs critical to a research and development environment, including domain-specific data modeling, abstraction of complex data models, and a customizable web client.