Privacy-preserving record linkage across disparate institutions and datasets to enable a learning health system: The national COVID cohort collaborative (N3C) experience.

Introduction: Research driven by real-world clinical data is increasingly vital to enabling learning health systems, but integrating such data from across disparate health systems is challenging. As part of the NCATS National COVID Cohort Collaborative (N3C), the N3C Data Enclave was established as a centralized repository of deidentified and harmonized COVID-19 patient data from institutions across the US. However, making this data most useful for research requires linking it with information such as mortality data, images, and viral variants. The objective of this project was to establish privacy-preserving record linkage (PPRL) methods to ensure that patient-level EHR data remains secure and private when governance-approved linkages with other datasets occur. Methods: Separate agreements and approval processes govern N3C data contribution and data access. The Linkage Honest Broker (LHB), an independent neutral party (the Regenstrief Institute), ensures data linkages are robust and secure by adding an extra layer of separation between protected health information and clinical data. The LHB's PPRL methods (including algorithms, processes, and governance) match patient records using "deidentified tokens," which are hashed combinations of identifier fields that define a match across data repositories without using patients' clear-text identifiers. Results: These methods enable three linkage functions: Deduplication, Linking Multiple Datasets, and Cohort Discovery. To date, two external repositories have been cross-linked. As of March 1, 2023, 43 sites have signed the LHB Agreement; 35 sites have sent tokens generated for 9 528 998 patients. In this initial cohort, the LHB identified 135 037 matches and 68 596 duplicates. Conclusion: This large-scale linkage study using deidentified datasets of varying characteristics established secure methods for protecting the privacy of N3C patient data when linked for research purposes. This technology has potential for use with registries for other diseases and conditions.

Leveraging data visualization and a statewide health information exchange to support COVID-19 surveillance and response: Application of public health informatics.

OBJECTIVE: We sought to support public health surveillance and response to coronavirus disease 2019 (COVID-19) through rapid development and implementation of novel visualization applications for data amalgamated across sectors. MATERIALS AND METHODS: We developed and implemented population-level dashboards that collate information on individuals tested for and infected with COVID-19, in partnership with state and local public health agencies as well as health systems. The dashboards are deployed on top of a statewide health information exchange. One dashboard enables authorized users working in public health agencies to surveil populations in detail, and a public version provides higher-level situational awareness to inform ongoing pandemic response efforts in communities. RESULTS: Both dashboards have proved useful informatics resources. For example, the private dashboard enabled detection of a local community outbreak associated with a meat packing plant. The public dashboard provides recent trend analysis to track disease spread and community-level hospitalizations. Combined, the tools were utilized 133 637 times by 74 317 distinct users between June 21 and August 22, 2020. The tools are frequently cited by journalists and featured on social media. DISCUSSION: Capitalizing on a statewide health information exchange, in partnership with health system and public health leaders, Regenstrief biomedical informatics experts rapidly developed and deployed informatics tools to support surveillance and response to COVID-19. CONCLUSIONS: The application of public health informatics methods and tools in Indiana holds promise for other states and nations. Yet, development of infrastructure and partnerships will require effort and investment after the current pandemic in preparation for the next public health emergency.

The Children's Respiratory and Environmental Workgroup (CREW) birth cohort consortium: design, methods, and study population.

BACKGROUND: Single birth cohort studies have been the basis for many discoveries about early life risk factors for childhood asthma but are limited in scope by sample size and characteristics of the local environment and population. The Children's Respiratory and Environmental Workgroup (CREW) was established to integrate multiple established asthma birth cohorts and to investigate asthma phenotypes and associated causal pathways (endotypes), focusing on how they are influenced by interactions between genetics, lifestyle, and environmental exposures during the prenatal period and early childhood. METHODS AND RESULTS: CREW is funded by the NIH Environmental influences on Child Health Outcomes (ECHO) program, and consists of 12 individual cohorts and three additional scientific centers. The CREW study population is diverse in terms of race, ethnicity, geographical distribution, and year of recruitment. We hypothesize that there are phenotypes in childhood asthma that differ based on clinical characteristics and underlying molecular mechanisms. Furthermore, we propose that asthma endotypes and their defining biomarkers can be identified based on personal and early life environmental risk factors. CREW has three phases: 1) to pool and harmonize existing data from each cohort, 2) to collect new data using standardized procedures, and 3) to enroll new families during the prenatal period to supplement and enrich extant data and enable unified systems approaches for identifying asthma phenotypes and endotypes. CONCLUSIONS: The overall goal of CREW program is to develop a better understanding of how early life environmental exposures and host factors interact to promote the development of specific asthma endotypes.

Sustainability considerations for clinical and translational research informatics infrastructure.

A robust biomedical informatics infrastructure is essential for academic health centers engaged in translational research. There are no templates for what such an infrastructure encompasses or how it is funded. An informatics workgroup within the Clinical and Translational Science Awards network conducted an analysis to identify the scope, governance, and funding of this infrastructure. After we identified the essential components of an informatics infrastructure, we surveyed informatics leaders at network institutions about the governance and sustainability of the different components. Results from 42 survey respondents showed significant variations in governance and sustainability; however, some trends also emerged. Core informatics components such as electronic data capture systems, electronic health records data repositories, and related tools had mixed models of funding including, fee-for-service, extramural grants, and institutional support. Several key components such as regulatory systems (e.g., electronic Institutional Review Board [IRB] systems, grants, and contracts), security systems, data warehouses, and clinical trials management systems were overwhelmingly supported as institutional infrastructure. The findings highlighted in this report are worth noting for academic health centers and funding agencies involved in planning current and future informatics infrastructure, which provides the foundation for a robust, data-driven clinical and translational research program.

The Emerging Role of the Chief Research Informatics Officer in Academic Health Centers.

BACKGROUND: The role of the Chief Research Informatics Officer (CRIO) is emerging in academic health centers to address the challenges clinical researchers face in the increasingly digitalized, data-intensive healthcare system. Most current CRIOs are the first officers in their institutions to hold that role. To date there is very little published information about this role and the individuals who serve it. OBJECTIVE: To increase our understanding of the CRIO role, the leaders who serve it, and the factors associated with their success in their organizations. METHODS: The Clinical Research Informatics Working Group of the American Medical Informatics Association (AMIA) conducted a national survey of CRIOs in the United States and convened an expert panel of CRIOs to discuss their experience during the 2016 AMIA Annual Symposium. RESULTS: CRIOs come from diverse academic backgrounds. Most have advance training and extensive experience in biomedical informatics but the majority have been CRIOs for less than three years. CRIOs identify funding, data governance, and advancing data analytics as their major challenges. CONCLUSION: CRIOs play an important role in helping shape the future of clinical research, innovation, and data analytics in healthcare in their organizations. They share many of the same challenges and see the same opportunities for the future of the field. Better understanding the background and experience of current CRIOs can help define and develop the role in other organizations and enhance their influence in the field of research informatics.

MD-CTS: An integrated terminology reference of clinical and translational medicine.

New vocabularies are rapidly evolving in the literature relative to the practice of clinical medicine and translational research. To provide integrated access to new terms, we developed a mobile and desktop online reference-Marshfield Dictionary of Clinical and Translational Science (MD-CTS). It is the first public resource that comprehensively integrates Wiktionary (word definition), BioPortal (ontology), Wiki (image reference), and Medline abstract (word usage) information. MD-CTS is accessible at http://spellchecker.mfldclin.edu/. The website provides a broadened capacity for the wider clinical and translational science community to keep pace with newly emerging scientific vocabulary. An initial evaluation using 63 randomly selected biomedical words suggests that online references generally provided better coverage (73%-95%) than paper-based dictionaries (57-71%).

Core informatics competencies for clinical and translational scientists: what do our customers and collaborators need to know?

Since the inception of the Clinical and Translational Science Award (CTSA) program in 2006, leaders in education across CTSA sites have been developing and updating core competencies for Clinical and Translational Science (CTS) trainees. By 2009, 14 competency domains, including biomedical informatics, had been identified and published. Since that time, the evolution of the CTSA program, changes in the practice of CTS, the rapid adoption of electronic health records (EHRs), the growth of biomedical informatics, the explosion of big data, and the realization that some of the competencies had proven to be difficult to apply in practice have made it clear that the competencies should be updated. This paper describes the process undertaken and puts forth a new set of competencies that has been recently endorsed by the Clinical Research Informatics Workgroup of AMIA. In addition to providing context and background for the current version of the competencies, we hope this will serve as a model for revision of competencies over time.

Genetic data and electronic health records: a discussion of ethical, logistical and technological considerations.

OBJECTIVE: The completion of sequencing the human genome in 2003 has spurred the production and collection of genetic data at ever increasing rates. Genetic data obtained for clinical purposes, as is true for all results of clinical tests, are expected to be included in patients' medical records. With this explosion of information, questions of what, when, where and how to incorporate genetic data into electronic health records (EHRs) have reached a critical point. In order to answer these questions fully, this paper addresses the ethical, logistical and technological issues involved in incorporating these data into EHRs. MATERIALS AND METHODS: This paper reviews journal articles, government documents and websites relevant to the ethics, genetics and informatics domains as they pertain to EHRs. RESULTS AND DISCUSSION: The authors explore concerns and tasks facing health information technology (HIT) developers at the intersection of ethics, genetics, and technology as applied to EHR development. CONCLUSIONS: By ensuring the efficient and effective incorporation of genetic data into EHRs, HIT developers will play a key role in facilitating the delivery of personalized medicine.

Integrating Governance of Research Informatics and Health Care IT Across an Enterprise: Experiences from the Trenches.

Advances in health information technology and biomedical informatics have laid the groundwork for significant improvements in healthcare and biomedical research. For instance, Electronic Health Records can help improve the delivery of evidence-based care, enhance quality, and contribute to discoveries and evidence generation. Despite this promise, there are many challenges to achieving the vision and missions of our healthcare and research enterprises. Given the challenges inherent in doing so, institutions are increasingly moving to establish dedicated leadership and governance models charged with designing, deploying and leveraging various information resources to advance research and advanced care activities at AHCs. Some institutions have even created a new leadership position to oversee such activities, such as the Chief Research Information Officer. This panel will include research informatics leaders discussing their experiences from the proverbial trenches as they work to operationalize such cross-mission governance models. Panelists will start by providing an overview their respective positions and environments, discuss their experiences, and share lessons learned through their work at the intersection of clinical and translational research informatics and Health IT.

Tendências da tecnologia da informação em saúde / Tendencies in Health Information Technology

O artigo apresenta uma visão parcial e simplificada das principais tendências observadas pelo autor na área de Tecnologia da Informação em Saúde. São destacados os seguintes assuntos: prontuário eletrônico, ASP, segurança e confidencialidade, e Internet (telemedicina, portais da saúde e educação a distância). Procura-se colocar a questão de novas tecnologias no contexto da sua aplicação. São também abordados os aspectos socioculturais do uso da Tecnologia da Informação

Identificaçäo única de pacientes: porque é necessária / Unique patient identifier: why is necessary

A partir da revisão do atual fluxo informatizado de atendimento de pacientes do HCFMUSP, constata-se a necessidade imediata de maior integração dos sistemas de informações em Saúde. Este artigo subsidia a Identificação Única de Pacientes como um mecanismo viável e efetivo na busca dessa integração.

Integraçäo de sistemas de informaçäo hospitalar e faturamento / Integration of hospitalar information system and billing

Os sistemas de faturamente hospitalar caracterizam-se por um grande volume e variedade de dados. Por outro lado, os sistemas de apoio a área médica, em sua maioria, não se integram naturalmente à esses sistemas, tornando necessário uma solução particular. No InCor a solução adotada caracteriza-se pela versatilidade, pois as regras de conversão estão armazenadas em banco de dados e configuráveis pelo próprio usuário.

Uma proposta de coleta de informaçöes para contas pacientes / Proposed of information colect to patient bills

Registrar e contabilizar procedimentos, materiais e medicamentos em grandes hospitais, é uma tarefa complexa que é composta das diferentes funções e modelos de dados. As informações necessárias às tarefas de gerência de faturamento, envolvem inúmeras unidades administrativas, técnicas e operacionais. Para introduzir uma solução automatizada desta gerência, propôs-se para o Incor, um modelo baseado na utilização de banco de dados relacional com ferramenta de 4GL.

Intranet e sistemas de informaçöes hospitalares / Intranet and hospitalar information systems

Com a crescente oferta de produtos e serviços para Internet, torna-se cada vez mais atraente o desenvolvimento de soluções que utilizem esta tecnologia. Para aplicação em Sistemas de informações Hospitalares (SIH), o uso desta solução mostra-se especialmente indicado, pois permite padronização de aplicações e interfaces em ambiente multi-plataforma e atende necessidades de comunicação fundamentais em Instituições de Saúde. Na sua forma original, a Internet paresenta alguns grandes problemas, como: tempos-de-resposta inadequados e baixa segurança. Propõe-se então a adoção de intranet, que permite o uso das tecnologias Internet dentro de um ambiente restrito e controlado, como novo paradigma de SIH. Pode-se então idealizar um modelo de SIH totalmente "aberto", alinhado com tendências atuais, capaz de integrar padrões como HL7 e DICOM além de apresentar todo um conjunto de serviços adicionais (correio eletrônico, troca de arquivos, emulação de terminais) bastante úteis.

Modelando dados para o SIH: sistema de informaçäo hospitalar do HCFMUSP / Data modelling for the SIH: hospitalar information systems of HCFMUSP

Este trabalho tem a intenção de demonstrar a experiência do processo de modelagem de dados como fator fundamental para o projeto de informatização do Hospital das Clínicas - FMUSP, ressaltando alguns métodos e a importância do profissional de administração de informações qualificado.