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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 [...]

The Peace Corps' disease surveillance for Peace Corps Volunteers (PCVs) was incorporated into an electronic medical records (EMR) system in 2015. We evaluated this EMR-based surveillance system, focusing particularly on malaria as it is deadly but preventable.

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.

To analyze current practices in shared decision-making (SDM) in primary care and perform a needs assessment for the role of information technology (IT) interventions.

Computerized clinical decision support (CDS) faces challenges to interoperability and scalability. Centralized, web-based solutions offer a mechanism to share the cost of CDS development, maintenance, and implementation across practices. Data standards have emerged to facilitate interoperability and rapid integration of such third-party CDS. This case report describes the challenges to implementation and scalability of an integrated, web-based CDS intervention for EMergency department-initiated BuprenorphinE for opioid use Disorder which will soon [...]