Rachel Richesson
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View article: PhenoFit: a framework for determining computable phenotyping algorithm fitness for purpose and reuse
PhenoFit: a framework for determining computable phenotyping algorithm fitness for purpose and reuse Open
Background Computational phenotyping from electronic health records (EHRs) is essential for clinical research, decision support, and quality/population health assessment, but the proliferation of algorithms for the same conditions makes it…
View article: The administrative burden of medication affordability resources: an environmental scan with implications for health informatics to advance health equity
The administrative burden of medication affordability resources: an environmental scan with implications for health informatics to advance health equity Open
Objective To characterize and demonstrate how to reduce the administrative burden experienced by patients when navigating medication affordability resources in the United States. Materials and Methods Informed by administrative burden theo…
View article: PhenoFit: A Framework for Determining Computable Phenotyping Algorithm Fitness for Purpose and Reuse
PhenoFit: A Framework for Determining Computable Phenotyping Algorithm Fitness for Purpose and Reuse Open
Background: Computational phenotyping from electronic health records (EHRs) is essential forclinical research, decision support, and quality/population health assessment, but theproliferation of algorithms for the same conditions makes it …
View article: LOINC implementation approaches in academic medical research centers – results from a survey of CTSA sites
LOINC implementation approaches in academic medical research centers – results from a survey of CTSA sites Open
Reference standards are vital for harmonizing heterogeneous clinical data for research, but little is known about their implementations or costs. We surveyed NIH Clinical and Translational Science Awards (CTSA) hubs to assess operational d…
View article: Collecting patient-reported outcome measures in the electronic health record: Lessons from the NIH pragmatic trials Collaboratory
Collecting patient-reported outcome measures in the electronic health record: Lessons from the NIH pragmatic trials Collaboratory Open
The NIH Pragmatic Trials Collaboratory supports the design and conduct of 27 embedded pragmatic clinical trials, and many of the studies collect patient reported outcome measures as primary or secondary outcomes. Study teams have encounter…
View article: Potential bias and lack of generalizability in electronic health record data: reflections on health equity from the National Institutes of Health Pragmatic Trials Collaboratory
Potential bias and lack of generalizability in electronic health record data: reflections on health equity from the National Institutes of Health Pragmatic Trials Collaboratory Open
Embedded pragmatic clinical trials (ePCTs) play a vital role in addressing current population health problems, and their use of electronic health record (EHR) systems promises efficiencies that will increase the speed and volume of relevan…
View article: Equity and bias in electronic health records data
Equity and bias in electronic health records data Open
View article: Knowledge infrastructure: a priority to accelerate workflow automation in health care
Knowledge infrastructure: a priority to accelerate workflow automation in health care Open
Dear Editors, We recognize that inefficient and idiosyncratic workflows in health care contribute to a myriad of obstacles for all healthcare stakeholders, including misuse of resources, provider burnout, and increased burden on patients a…
View article: Characterizing variability of electronic health record-driven phenotype definitions
Characterizing variability of electronic health record-driven phenotype definitions Open
Objective The aim of this study was to analyze a publicly available sample of rule-based phenotype definitions to characterize and evaluate the variability of logical constructs used. Materials and Methods A sample of 33 preexisting phenot…
View article: Guiding principles for technical infrastructure to support computable biomedical knowledge
Guiding principles for technical infrastructure to support computable biomedical knowledge Open
Over the past 4 years, the authors have participated as members of the Mobilizing Computable Biomedical Knowledge Technical Infrastructure working group and focused on conceptualizing the infrastructure required to use computable biomedica…
View article: Linked Metadata for FAIR Digital Objects Carrying Computable Knowledge
Linked Metadata for FAIR Digital Objects Carrying Computable Knowledge Open
Introduction To advance the goals of the Mobilizing Computable Biomedical Knowledge (MCBK) Movement, we are exploring the use of FAIR Digital Objects (FDOs) (De Smedt et al. 2020, Williams et al. 2021). First, we are beginning to clarify t…
View article: Computable phenotypes for cohort identification: core content for a new class of FAIR Digital Objects
Computable phenotypes for cohort identification: core content for a new class of FAIR Digital Objects Open
Introduction We present current work to develop and define a class of digital objects that facilitates patient cohort identification for clinical studies, such that these objects are Findable, Accessible, Interoperable, and Reusable (FAIR)…
View article: Evolving a national clinical trials learning health system
Evolving a national clinical trials learning health system Open
Clinical trials generate key evidence to inform decision making, and also benefit participants directly. However, clinical trials frequently fail, often struggle to enroll participants, and are expensive. Part of the problem with trial con…
View article: Characterizing Variability of EHR-Driven Phenotype Definitions
Characterizing Variability of EHR-Driven Phenotype Definitions Open
Objective Analyze a publicly available sample of rule-based phenotype definitions to characterize and evaluate the types of logical constructs used. Materials & Methods A sample of 33 phenotype definitions used in research and published to…
View article: Episodic Ataxia Type 1: Natural History and Effect on Quality of Life
Episodic Ataxia Type 1: Natural History and Effect on Quality of Life Open
Episodic ataxia type 1 (EA1) is a rare autosomal potassium channelopathy, due to mutations in KCNA1 . Patients have childhood onset of intermittent attacks of ataxia, dizziness or imbalance. In order to quantify the natural history of EA1,…
View article: Informatics education for translational research teams: An unrealized opportunity to strengthen the national research infrastructure
Informatics education for translational research teams: An unrealized opportunity to strengthen the national research infrastructure Open
Objective: To identify the informatics educational needs of clinical and translational research professionals whose primary focus is not informatics. Introduction: Informatics and data science skills are essential for the full spectrum of …
View article: Summary of fourth annual <scp>MCBK</scp> public meeting: Mobilizing computable biomedical knowledge—metadata and trust
Summary of fourth annual <span>MCBK</span> public meeting: Mobilizing computable biomedical knowledge—metadata and trust Open
The exponential growth of biomedical knowledge in computable formats challenges organizations to consider mobilizing artifacts in findable, accessible, interoperable, reusable, and trustable (FAIR+T) ways 1 . There is a growing need to app…
View article: Evaluating Completeness of Discrete Data on Physical Functioning for Children With Cerebral Palsy in a Pediatric Rehabilitation Learning Health System
Evaluating Completeness of Discrete Data on Physical Functioning for Children With Cerebral Palsy in a Pediatric Rehabilitation Learning Health System Open
Objective The purpose of this study was to determine the extent that physical function discrete data elements (DDE) documented in electronic health records (EHR) are complete within pediatric rehabilitation settings. Methods A descriptive …
View article: Enhancing the use of EHR systems for pragmatic embedded research: lessons from the NIH Health Care Systems Research Collaboratory
Enhancing the use of EHR systems for pragmatic embedded research: lessons from the NIH Health Care Systems Research Collaboratory Open
Objective We identified challenges and solutions to using electronic health record (EHR) systems for the design and conduct of pragmatic research. Materials and Methods Since 2012, the Health Care Systems Research Collaboratory has served …
View article: Desiderata for the development of next-generation electronic health record phenotype libraries
Desiderata for the development of next-generation electronic health record phenotype libraries Open
Background High-quality phenotype definitions are desirable to enable the extraction of patient cohorts from large electronic health record repositories and are characterized by properties such as portability, reproducibility, and validity…
View article: ASL expression in ALDH1A1+ neurons in the substantia nigra metabolically contributes to neurodegenerative phenotype
ASL expression in ALDH1A1+ neurons in the substantia nigra metabolically contributes to neurodegenerative phenotype Open
Argininosuccinate lyase (ASL) is essential for the NO-dependent regulation of tyrosine hydroxylase (TH) and thus for catecholamine production. Using a conditional mouse model with loss of ASL in catecholamine neurons, we demonstrate that A…
View article: Development of a standards‐based phenotype model for gross motor function to support learning health systems in pediatric rehabilitation
Development of a standards‐based phenotype model for gross motor function to support learning health systems in pediatric rehabilitation Open
Introduction Research and continuous quality improvement in pediatric rehabilitation settings require standardized data and a systematic approach to use these data. Methods We systematically examined pediatric data concepts from a pediatri…
View article: A Conceptual Framework of Data Readiness: The Contextual Intersection of Quality, Availability, Interoperability, and Provenance
A Conceptual Framework of Data Readiness: The Contextual Intersection of Quality, Availability, Interoperability, and Provenance Open
Background Data readiness is a concept often used when referring to health information technology applications in the informatics disciplines, but it is not clearly defined in the literature. To avoid misinterpretations in research and imp…
View article: A thematic analysis to examine the feasibility of EHR-based clinical decision support for implementing <i>Choosing Wisely</i>® guidelines
A thematic analysis to examine the feasibility of EHR-based clinical decision support for implementing <i>Choosing Wisely</i>® guidelines Open
Objective To identify important barriers and facilitators relating to the feasibility of implementing clinical practice guidelines (CPGs) as clinical decision support (CDS). Materials and Methods We conducted a qualitative, thematic analys…
View article: Summary of third annual <scp>MCBK</scp> public meeting: Mobilizing computable biomedical knowledge—Accelerating the second knowledge revolution
Summary of third annual <span>MCBK</span> public meeting: Mobilizing computable biomedical knowledge—Accelerating the second knowledge revolution Open
The volume of biomedical knowledge is growing exponentially and much of this knowledge is represented in computer executable formats, such as models, algorithms, and programmatic code. There is a growing need to apply this knowledge to imp…
View article: Electronic Health Record–Embedded Individualized Pain Plans for Emergency Department Treatment of Vaso-occlusive Episodes in Adults With Sickle Cell Disease: Protocol for a Preimplementation and Postimplementation Study
Electronic Health Record–Embedded Individualized Pain Plans for Emergency Department Treatment of Vaso-occlusive Episodes in Adults With Sickle Cell Disease: Protocol for a Preimplementation and Postimplementation Study Open
Background Individuals living with sickle cell disease often require aggressive treatment of pain associated with vaso-occlusive episodes in the emergency department. Frequently, pain relief is poor. The 2014 National Heart, Lung, and Bloo…
View article: Electronic Health Record–Embedded Individualized Pain Plans for Emergency Department Treatment of Vaso-occlusive Episodes in Adults With Sickle Cell Disease: Protocol for a Preimplementation and Postimplementation Study (Preprint)
Electronic Health Record–Embedded Individualized Pain Plans for Emergency Department Treatment of Vaso-occlusive Episodes in Adults With Sickle Cell Disease: Protocol for a Preimplementation and Postimplementation Study (Preprint) Open
BACKGROUND Individuals living with sickle cell disease often require aggressive treatment of pain associated with vaso-occlusive episodes in the emergency department. Frequently, pain relief is poor. The 2014 National Heart, Lung, and Blo…
View article: Association between evidence-based training and clinician proficiency in electronic health record use
Association between evidence-based training and clinician proficiency in electronic health record use Open
Objectives The purpose of the study was to determine if association exists between evidence-based provider training and clinician proficiency in electronic health record (EHR) use and if so, which EHR use metrics and vendor-defined indices…
View article: Learning health systems, embedded research, and data standards—recommendations for healthcare system leaders
Learning health systems, embedded research, and data standards—recommendations for healthcare system leaders Open
Learning health systems that conduct embedded research require infrastructure for the seamless adoption of clinical interventions; this infrastructure should integrate with electronic health record (EHR) systems and enable the use of exist…
View article: Disseminating trial results: We can have both faster and better
Disseminating trial results: We can have both faster and better Open