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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.

Text-messaging interventions are a promising approach to increasing physical activity in vulnerable populations. To better inform the development of a text-messaging intervention, we sought to identify barriers and facilitators to using text messaging and engaging in physical activity among patients with diabetes and comorbid depression.

Patient-Generated Health Data (PGHD) in remote monitoring programs is a promising source of precise, personalized data, encouraged by expanding growth in the health technologies market. However, PGHD utilization in clinical settings is low. One of the critical challenges that impedes confident clinical use of PGHD is that these data are not managed according to any recognized approach for data quality assurance.

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 [...]

Third-party platforms have emerged to support small primary care practices for calculating and reporting electronic clinical quality measures (eCQM) for federal programs like The Medicare Access and CHIP Reauthorization Act of 2015 (MACRA) and Merit-based Incentive Payment System (MIPS). Yet little is known about the capabilities and limitations of electronic health record systems (EHRs) to enable data access for these programs. We connected 116 small- to medium-sized practices with seven [...]

In March 2018, the Food and Drug Administration (FDA) announced its authorization of a direct-to-consumer (DTC) genetic test for three pathogenic BRCA1/2 variants. We sought to determine to whether social media discussion increased following the authorization, who was driving social media conversations, and what topics were discussed.

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 [...]

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.