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Clinical prediction models require updating as performance deteriorates over time. We developed a testing procedure to select updating methods that minimizes overfitting, incorporates uncertainty associated with updating sample sizes, and is applicable to both parametric and nonparametric models.

To design, develop, and evaluate a scalable clinical data normalization pipeline for standardizing unstructured electronic health record (EHR) data leveraging the HL7 Fast Healthcare Interoperability Resources (FHIR) specification.

To implement an open-source tool that performs deterministic privacy-preserving record linkage (RL) in a real-world setting within a large research network.

An important component of processing medical texts is the identification of synonymous words or phrases. Synonyms can inform learned representations of patients or improve linking mentioned concepts to medical ontologies. However, medical synonyms can be lexically similar ("dilated RA" and "dilated RV") or dissimilar ("cerebrovascular accident" and "stroke"); contextual information can determine if 2 strings are synonymous. Medical professionals utilize extensive variation of medical terminology, often not evidenced in structured [...]

Managing registries with continual data collection poses challenges, such as following reproducible research protocols and guaranteeing data accessibility. The University of Kansas (KU) Alzheimer's Disease Center (ADC) maintains one such registry: Curated Clinical Cohort Phenotypes and Observations (C3PO). We created an automated and reproducible process by which investigators have access to C3PO data.

Patient portal use has increased over the last two decades in response to consumer demand and government regulation. Despite growing adoption, few guidelines exist to direct successful implementation and governance. We describe the policies and procedures that have governed over a decade of continuous My Health at Vanderbilt (MHAV) patient portal use.

We sought to measure patient portal satisfaction with patient portals and characterize its relationship to attitude towards computers, health literacy, portal usage, and patient demographics.

HL7 International's Fast Healthcare Interoperability Resources (FHIR) standard provides a common format for sharing health data (eg, FHIR resources) and a RESTful Application Programming Interface (eg, FHIR API) for accessing those resources via a FHIR server connected to an electronic health record system or any other system storing clinical data. Substitutable Medical Applications and Reusable Technologies (SMART) leverages FHIR to create an electronic health record (EHR) agnostic app platform. It [...]

There is a need to understand how patients are managed in the real world to better understand disease burden and unmet need. Traditional approaches to gather these data include the use of electronic medical record (EMR) or claims databases; however, in many cases data access policies prevent rapid insight gathering. Social media may provide a potential source of real-world data to assess treatment patterns, but the limitations and biases of [...]

Data sharing agreements that clearly describe what individuals are agreeing to and what responsibilities data stewards will undertake are crucial for the establishment, maintenance, and flourishing of genomic datasets. To optimize genomic data resources, researchers, care professionals, and informaticians must regard system design, user objectives, and environmental considerations through users' eyes, identifying fundamental values on which to build and potential barriers to success that must be avoided. Design of agreements [...]