RESUMO
The US National Institutes of Health (NIH) has developed the Biomedical Translational Research Information System (BTRIS) to support researchers' access to translational and clinical data. BTRIS includes a data repository, a set of programs for loading data from NIH electronic health records and research data management systems, an ontology for coding the disparate data with a single terminology, and a set of user interface tools that provide access to identified data from individual research studies and data across all studies from which individually identifiable data have been removed. This paper reports on unique design elements of the system, progress to date and user experience after five years of development and operation.
Assuntos
Ontologias Biológicas , Pesquisa Biomédica/métodos , Sistemas de Gerenciamento de Base de Dados , Pesquisa Translacional Biomédica/métodos , Registros Eletrônicos de Saúde , Humanos , National Institutes of Health (U.S.) , Estados UnidosRESUMO
The US National Institutes of Health has developed a repository of clinical research data drawn in part from electronic health records. A new de-identified data query tool under development has been developed to support re-use of these data. We used a collection of 30 human-mediated user queries to determine whether features of the tool will be sufficient to allow users to carry out the queries themselves. The results show that the tool implemented in February 2013 will carry out a small percentage of user queries but the planned extensions will be sufficient for carrying out the majority of such queries. Future development of the tool will include extensions that correspond to the features found in human-mediated queries.
Assuntos
Segurança Computacional , Confidencialidade , Mineração de Dados/métodos , Registros Eletrônicos de Saúde , Armazenamento e Recuperação da Informação/métodos , Software , Interface Usuário-Computador , Sistemas de Gerenciamento de Base de DadosAssuntos
American Recovery and Reinvestment Act , Dietética/organização & administração , Dietética/normas , Registros Eletrônicos de Saúde/organização & administração , Segurança Computacional , Processamento Eletrônico de Dados , Registros Eletrônicos de Saúde/legislação & jurisprudência , Registros de Saúde Pessoal , Humanos , Legislação Médica , Reembolso de Incentivo , Medidas de Segurança , Estados UnidosRESUMO
The US National Institutes of Health (NIH) includes 27 institutes and centers, many of which conduct clinical research. Previously, data collected in research trials has existed in multiple, disparate databases. This paper describes the design, implementation and experience to date with the Biomedical Translational Research Information System (BTRIS), being developed at NIH to consolidate clinical research data. BTRIS is intended to simplify data access and analysis of data from active clinical trials and to facilitate reuse of existing data to answer new questions. Unique aspects of the system includes a Research Entities Dictionary that unifies all controlled terminologies used by source systems and a hybrid data model that unifies parts of the source data models and include other data in entity-attribute value tables. BTRIS currently includes over 300 million rows of data, from three institutes, ranging from 1976 to present. Users are able to retrieve data on their own research subjects in identified form as well as deidentified data on all subjects.
