Background Clinical data exchange remains fragmented and insufficient to support coordinated, safe care. Decades of technological progress, standards development, and interoperability-focused legislative and regulatory improvements have been incremental, underscoring the need for unifying initiatives to coordinate and improve operations and outcomes. Objectives We sought to identify persistent barriers limiting clinical data interoperability. We propose a coordinated, time-bound U.S. "moonshot" initiative to create a unified canonical clinical terminology ("SuperSNOMED") and catalyze rapid refinement and streamlined adoption of Fast Healthcare Interoperability Resources (FHIR) and Implementation Guides (IGs) to accelerate safe, high-fidelity data exchange. Methods We synthesized insights from an expert roundtable; conducted additional expert discussions; appraised peer-reviewed published and online evidence on standards, interoperability policies, and developing regulations; and then identified barriers to interoperability implementation. We then developed recommendations for policy, legislative, and regulatory changes. Results We identified five barrier domains: fragmented terminology standards and value sets; multiple overlapping data exchange standards with uneven FHIR adoption; incomplete or misaligned certification and policy incentives; variable interpretation and implementation of IGs; and insufficient funding and support for standards development. We propose a national program including three coordinated pillars: SuperSNOMED, a well-governed, rapidly maintained, canonical terminology integrating major domains and mappings; FHIR acceleration converging on a minimum set of IGs and certified legacy-data transforms during a transition window; and policy and governance for certification criteria, incentive alignment, and funding a paid expert task force to execute an ambitious 3-year plan. Certification and workforce incentives with transitional data-quality safeguards such as reconciliation-on-first-use for transformed historical data would catalyze high-impact interoperability beyond existing EHR regulatory programs, clinical information systems, and knowledge bases critical to health care. Conclusion Interoperability remains fragmented despite progress. This state-of-the-art paper is a call to action for a focused, funded, well-governed national moonshot effort to unify terminology and streamline exchange standards.

Abstract Background Health care organizations seek to maximize efficiency and effectiveness when sending patient event notifications required by the U.S. Centers for Medicare and Medicaid Services Interoperability and Patient Access Final Rule. Objectives To identify the barriers for senders (i.e., hospitals) and receivers (Department of Veterans Affairs [VA] and non-VA) of patient event notifications using the Direct Standard, the transport method standard that addresses Direct Messaging (DM). Methods Questions were asked to better understand perceived barriers to sending and receiving event notifications as well as involvement with event notifications with VA. Open coding was used to identify themes in the transcribed interviews. Results Analysis of the interviews (n = 17) showed workflow barriers, including identifying a patient's provider, the provider's Direct address, and whether a patient is an enrolled Veteran, were the most common barriers. Next were technical barriers, such as payload and electronic health record ingestion of event notifications. Less common barriers included content, policy/governance, cost, and organizational issues. The interviews also highlighted a promising pilot between VA and an aggregator. Conclusion Overall, interviewees felt that event notifications are a benefit from a coordination of care perspective for patients and clinical care teams. Also, interviewees felt that DirectTrust's Implementation Guide for Event Notifications via the Direct Standard has helped guide (and perhaps the DirectTrust Directory could help guide) the industry in sending and more effectively receiving event notifications.

AbstractObjectivesIntroduce the CDS-Sandbox, a cloud-based virtual machine created to facilitate Clinical Decision Support (CDS) developers and implementers in the use of FHIR- and CQL-based open-source tools and technologies for building and testing CDS artifacts.Materials and MethodsThe CDS-Sandbox includes components that enable workflows for authoring and testing CDS artifacts. Two workshops at the 2020 and 2021 AMIA Annual Symposia were conducted to demonstrate the use of the open-source CDS tools.ResultsThe CDS-Sandbox successfully integrated the use of open-source CDS tools. Both workshops were well attended. Participants demonstrated use and understanding of the workshop materials and provided positive feedback after the workshops.DiscussionThe CDS-Sandbox and publicly available tutorial materials facilitated an understanding of the leading-edge open-source CDS infrastructure components.ConclusionThe CDS-Sandbox supports integrated use of the key CDS open-source tools that may be used to introduce CDS concepts and practice to the clinical informatics community.

A discussion and debate on the American Medical Informatics Association's (AMIA) Ethical, Legal, and Social Issues (ELSI) Working Group listserv in 2021 raised important issues related to a forthcoming conference in Texas. Texas had recently enacted a restrictive abortion law and restricted voting rights. Several AMIA members advocated for a boycott of the state and the scheduled conference. The discussion led the AMIA Board of Directors to request that the organization's Ethics Committee provide general guidance for principle-based venue selection. This document recommends overarching principles for the venue selection for future AMIA events and conferences. Discussions by the AMIA Board, the Ethics Committee, and the ELSI Working Group informed these recommendations, and this document on guiding principles was approved by the AMIA Board of Directors in April 2022.

Background Health systems and providers across America are increasingly employing telehealth technologies to better serve medically underserved low-income, minority, and rural populations at the highest risk for health disparities. The Patient-Centered Outcomes Research Institute (PCORI) has invested US $386 million in comparative effectiveness research in telehealth, yet little is known about the key early lessons garnered from this research regarding the best practices in using telehealth to address disparities. Objective This paper describes preliminary lessons from the body of research using study findings and case studies drawn from PCORI seminal patient-centered outcomes research (PCOR) initiatives. The primary purpose was to identify common barriers and facilitators to implementing telehealth technologies in populations at risk for disparities. Methods A systematic scoping review of telehealth studies addressing disparities was performed. It was guided by the Arksey and O’Malley Scoping Review Framework and focused on PCORI’s active portfolio of telehealth studies and key PCOR identified by study investigators. We drew on this broad literature using illustrative examples from early PCOR experience and published literature to assess barriers and facilitators to implementing telehealth in populations at risk for disparities, using the active implementation framework to extract data. Major themes regarding how telehealth interventions can overcome barriers to telehealth adoption and implementation were identified through this review using an iterative Delphi process to achieve consensus among the PCORI investigators participating in the study. Results PCORI has funded 89 comparative effectiveness studies in telehealth, of which 41 assessed the use of telehealth to improve outcomes for populations at risk for health disparities. These 41 studies employed various overlapping modalities including mobile devices (29/41, 71%), web-based interventions (30/41, 73%), real-time videoconferencing (15/41, 37%), remote patient monitoring (8/41, 20%), and store-and-forward (ie, asynchronous electronic transmission) interventions (4/41, 10%). The studies targeted one or more of PCORI’s priority populations, including racial and ethnic minorities (31/41, 41%), people living in rural areas, and those with low income/low socioeconomic status, low health literacy, or disabilities. Major themes identified across these studies included the importance of patient-centered design, cultural tailoring of telehealth solutions, delivering telehealth through trusted intermediaries, partnering with payers to expand telehealth reimbursement, and ensuring confidential sharing of private information. Conclusions Early PCOR evidence suggests that the most effective health system- and provider-level telehealth implementation solutions to address disparities employ patient-centered and culturally tailored telehealth solutions whose development is actively guided by the patients themselves to meet the needs of specific communities and populations. Further, this evidence shows that the best practices in telehealth implementation include delivery of telehealth through trusted intermediaries, close partnership with payers to facilitate reimbursement and sustainability, and safeguards to ensure patient-guided confidential sharing of personal health information.

The COVID-19 pandemic response in the United States has exposed significant gaps in information systems and processes that prevent timely clinical and public health decision-making. Specifically, the use of informatics to mitigate the spread of SARS-CoV-2, support COVID-19 care delivery, and accelerate knowledge discovery bring to the forefront issues of privacy, surveillance, limits of state powers, and interoperability between public health and clinical information systems. Using a consensus-building process, we critically analyze informatics-related ethical issues in light of the pandemic across 3 themes: (1) public health reporting and data sharing, (2) contact tracing and tracking, and (3) clinical scoring tools for critical care. We provide context and rationale for ethical considerations and recommendations that are actionable during the pandemic and conclude with recommendations calling for longer-term, broader change (beyond the pandemic) for public health organization and policy reform.

OBJECTIVE This article reports results from a systematic literature review related to the evaluation of data visualizations and visual analytics technologies within the health informatics domain. The review aims to (1) characterize the variety of evaluation methods used within the health informatics community and (2) identify best practices. METHODS A systematic literature review was conducted following PRISMA guidelines. PubMed searches were conducted in February 2017 using search terms representing key concepts of interest: health care settings, visualization, and evaluation. References were also screened for eligibility. Data were extracted from included studies and analyzed using a PICOS framework: Participants, Interventions, Comparators, Outcomes, and Study Design. RESULTS After screening, 76 publications met the review criteria. Publications varied across all PICOS dimensions. The most common audience was healthcare providers (n = 43), and the most common data gathering methods were direct observation (n = 30) and surveys (n = 27). About half of the publications focused on static, concentrated views of data with visuals (n = 36). Evaluations were heterogeneous regarding setting and measurements used. DISCUSSION When evaluating data visualizations and visual analytics technologies, a variety of approaches have been used. Usability measures were used most often in early (prototype) implementations, whereas clinical outcomes were most common in evaluations of operationally-deployed systems. These findings suggest opportunities for both (1) expanding evaluation practices, and (2) innovation with respect to evaluation methods for data visualizations and visual analytics technologies across health settings. CONCLUSION Evaluation approaches are varied. New studies should adopt commonly reported metrics, context-appropriate study designs, and phased evaluation strategies.

Objective This article reports results from a systematic literature review related to the evaluation of data visualizations and visual analytics technologies within the health informatics domain. The review aims to (1) characterize the variety of evaluation methods used within the health informatics community and (2) identify best practices. Methods A systematic literature review was conducted following PRISMA guidelines. PubMed searches were conducted in February 2017 using search terms representing key concepts of interest: health care settings, visualization, and evaluation. References were also screened for eligibility. Data were extracted from included studies and analyzed using a PICOS framework: Participants, Interventions, Comparators, Outcomes, and Study Design. Results After screening, 76 publications met the review criteria. Publications varied across all PICOS dimensions. The most common audience was healthcare providers (n=43), and the most common data gathering methods were direct observation (n=30) and surveys (n=27). About half of the publications focused on static, concentrated views of data with visuals (n=36). Evaluations were heterogeneous regarding setting and measurements used. Discussion When evaluating data visualizations and visual analytics technologies, a variety of approaches have been used. Usability measures were used most often in early (prototype) implementations, whereas clinical outcomes were most common in evaluations of operationally-deployed systems. These findings suggest opportunities for both (1) expanding evaluation practices, and (2) innovation with respect to evaluation methods for data visualizations and visual analytics technologies across health settings. Conclusion Evaluation approaches are varied. New studies should adopt commonly reported metrics, context-appropriate study designs, and phased evaluation strategies.

The U.S. Department of Veterans Affairs (VA) Veteran Health Information Exchange (VHIE, formerly Virtual Lifetime Electronic Record, or VLER) Retail Immunization Coordination Project established a partnership between VA and Walgreens to empower Veterans to elect to receive their immunizations at a local Walgreens, which might be located closer to their home than their nearest VA facility. Analysis of Veterans immunized at Walgreens between September 2014 and January 2015 showed that 64% of study Veterans now traveled <5 miles to receive their immunization, 12% of study Veterans traveled between 5 to 10 miles, and 24% of study Veterans traveled more than 10 miles. In addition, we note that 93% of Veterans traveled less than 54 miles, the average distance rural Veterans traveled to the nearest VA facility. We conclude that the VHIE Retail Immunization Coordination Project improved Veteran access to healthcare and discuss future directions of this effort.

The U.S. Department of Veterans Affairs (VA) Veteran Health Information Exchange (VHIE, formerly Virtual Lifetime Electronic Record, or VLER) had been deployed at all VA sites and used to exchange clinical information with private sector healthcare partners nationally. This paper examined VHIE's effect on allergy documentation. Review of all inbound VHIE transactions in FY14 showed that VHIE use was associated with a nearly eight-fold increase in allergy documentation rate. Preliminary manual document review further showed that VA and partners had shared knowledge of only 38% ofpatient allergies, while VA had exclusive knowledge of another 58% ofpatient allergies, and partners had exclusive knowledge of the last 5% of patient allergies. To our knowledge, this is the first study that examined the effect of HIE on allergy documentation.

As part of ongoing data quality efforts authors monitored health information retrieved through the United States Department of Veterans Affairs' (VA) Virtual Lifetime Electronic Record (VLER) Health operation. Health data exchanged through the eHealth Exchange (managed by Healtheway, Inc.) between VA and external care providers was evaluated in order to test methods of data quality surveillance and to identify key quality concerns. Testing evaluated transition of care data from 20 VLER Health partners. Findings indicated operational monitoring discovers issues not addressed during onboarding testing, that many issues result from specification ambiguity, and that many issues require human review. We make recommendations to address these issues, specifically to embed automated testing tools within information exchange transactions and to continuously monitor and improve data quality, which will facilitate adoption and use.

Authors studied the United States (U.S.) Department of Veterans Affairs' (VA) Virtual Lifetime Electronic Record (VLER) Health pilot phase relative to two attributes of data quality - the adoption of eHealth Exchange data standards, and clinical content exchanged. The VLER Health pilot was an early effort in testing implementation of eHealth Exchange standards and technology. Testing included evaluation of exchange data from the VLER Health pilot sites partners: VA, U.S. Department of Defense (DoD), and private sector health care organizations. Domains assessed data quality and interoperability as it relates to: 1) conformance with data standards related to the underlying structure of C32 Summary Documents (C32) produced by eHealth Exchange partners; and 2) the types of C32 clinical content exchanged. This analysis identified several standards non-conformance issues in sample C32 files and informed further discourse on the methods needed to effectively monitor Health Information Exchange (HIE) data content and standards conformance.

PURPOSE:We describe the Department of Veterans Affairs' (VA) Virtual Lifetime Health Electronic Record (VLER) pilot phase in 12 communities to exchange health information with private sector health care organizations and the Department of Defense (DoD), key findings, lessons, and implications for advancing Health Information Exchanges (HIE), nationally. METHODS:A mixed methods approach was used to monitor and evaluate the status of VLER Health Exchange pilot phase implementation from December 2009 through October 2012. Selected accomplishments, contributions, challenges, and early lessons that are relevant to the growth of nationwide HIE are discussed. RESULTS:Veteran patient and provider acceptance, trust, and perceived value of VLER Health Exchange are found to be high, and usage by providers is steadily growing. Challenges and opportunities to improve provider use are identified, such as better data quality and integration with workflow. Key findings and lessons for advancing HIE are identified. CONCLUSIONS:VLER Health Exchange has made great strides in advancing HIE nationally by addressing important technical and policy issues that have impeded scalability, and by increasing trust and confidence in the value and accuracy of HIE among users. VLER Health Exchange has advanced HIE interoperability standards and patient consent policies nationally. Policy, programmatic, technology, and health Information Technology (IT) standards implications to advance HIE for improved delivery and coordination of health care are discussed. The pilot phase success led to VA-wide deployment of this data sharing capability in 2013.

In this study, we established a computational framework of comparative network analysis to identify the conserved and species-specific functions of cell-wall (CW) related genes [1, 2], an important gene family related to plant bio-fuel productions across multiple tissue types between Arabidopsis and Poplar. The co-expressed genes are believed to coordinate in transcription so that they may have similar functions [3, 4]. Also, a comparative analysis across species for gene co-expression networks (GCNs) provides a systematic way to understand genomic conserved or species-specific functions [5]. Therefore, to understand the functions of CW genes in different tissue types, we integrated and compared the network characteristics of CW genes across GCNs from different tissue types including leaf, flower and shoot for Arabidopsis and Poplar [6]. First, by aligning the gene co-expression sub-networks associated with CW genes between two plants for each tissue type, we grouped the tissue types based on the alignment of the CW genes along with their neighboring orthologous genes. For those tissues with good alignments, it suggests that CW genes coordinate in a similar way for both plants, which may have involved in the conserved functions. For the tissues with poor alignments, however, CW genes may take part in species-specific functions. The gene ontology enrichment and signaling pathways of their co-expressed neighboring genes were identified to provide new insight for cell wall biology. Second, since the genes with high network centralities of a GCN, so called "hub" genes, are believed to have key functions [7], we investigated the network centralities for the CW genes between two plants to understand their functions in a global network point of view. The network centralities of GCN that we used are clustering coefficient (CC) for measuring gene's local cliqueness, and eigenvector centrality (EC) for measuring gene's global influence over the entire network. Besides finding hub genes for each tissue type within and across two plants, we also identified the conserved hub genes and tissue-specific hub genes in either local or global fashion. The CW genes that happen to become hub were particularly of interest to study. If many CW genes are global hubs in certain tissues, it implies that cell wall related activities may interact with the whole plant in those tissues, but if local hubs, they may coordinate with certain local activities only. Finally, we used the genomic variation data to identify the species-specific SNPs, especially in the promoter regions of the CW co-expressed neighboring genes across tissues, and associate them with corresponding species-specific functions. In summary, our comparative network analysis framework studied gene co-expression networks for the cell wall related genes across different tissue types in Arabidopsis and Poplar, and identified their conserved and species-specific functions and variations. This framework can also be used to study other gene families along with their functions across multiple species.