Using the ResearchEHR platform to facilitate the practical application of the EHR standards

Possibly the most important requirement to support co-operative work among health professionals and institutions is the ability of sharing EHRs in a meaningful way, and it is widely acknowledged that standardization of data and concepts is a prerequisite to achieve semantic interoperability in any domain. Different international organizations are working on the definition of EHR architectures but the lack of tools that implement them hinders their broad adoption. In this paper we present ResearchEHR, a software platform whose objective is to facilitate the practical application of EHR standards as a way of reaching the desired semantic interoperability. This platform is not only suitable for developing new systems but also for increasing the standardization of existing ones. The work reported here describes how the platform allows for the edition, validation, and search of archetypes, converts legacy data into normalized, archetypes extracts, is able to generate applications from archetypes and finally, transforms archetypes and data extracts into other EHR standards. We also include in this paper how ResearchEHR has made possible the application of the CEN/ISO 13606 standard in a real environment and the lessons learnt with this experience. © 2011 Elsevier Inc..This work has been partially supported by the Spanish Ministry of Science and Innovation under Grants TIN2010-21388-C02-01 and TIN2010-21388-C02-02, and by the Health Institute Carlos in through the RETICS Combiomed, RD07/0067/2001. Our most sincere thanks to the Hospital of Fuenlabrada in Madrid, including its Medical Director Pablo Serrano together with Marta Terron and Luis Lechuga for their support and work during the development of the medications reconciliation project.Maldonado Segura, JA.; Martínez Costa, C.; Moner Cano, D.; Menárguez-Tortosa, M.; Boscá Tomás, D.; Miñarro Giménez, JA.; Fernández-Breis, JT.... (2012). Using the ResearchEHR platform to facilitate the practical application of the EHR standards. Journal of Biomedical Informatics. 45(4):746-762. doi:10.1016/j.jbi.2011.11.004S74676245

Performance/outcomes data and physician process challenges for practical big data efforts in radiation oncology

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/146290/1/mp13136.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/146290/2/mp13136_am.pd

User Interfaces for Patient-Centered Communication of Health Status and Care Progress

The recent trend toward patients participating in their own healthcare has opened up numerous opportunities for computing research. This dissertation focuses on how technology can foster this participation, through user interfaces to effectively communicate personal health status and care progress to hospital patients. I first characterize the design space for electronic information communication to patients through field studies conducted in multiple hospital settings. These studies utilize a combination of survey instruments, and low- and high-fidelity prototypes, including a document-editing prototype through which users can view and manage clinical data to automatically associate it with progress notes. The prototype, activeNotes, includes the first known techniques supporting clinical information requests directly within a document editor. A usage study with ICU physicians at New York-Presbyterian Hospital (NYP) substantiated our design and revealed how electronic information related to patient status and care progress is derived from a typical Electronic Health Record system. Insights gained from this study informed following studies to understand how to design abstracted, plain-language views suitable for patients. We gauged both patient and physician responses to information display prototypes deployed in patient rooms for a formative study exploring their design. Following my reports on this study, I discuss the design, development and pilot evaluations of a prototype Personal Health Record application providing live, abstracted clinical information for patients at NYP. The portal, evaluated by cardiothoracic surgery patients, is the first of its kind to allow patients to capture and monitor live data related to their care. Patient use of the portal influenced the subsequent design of tools to support users in making sense of online medication information. These tools, designed with nurses and pharmacists and evaluated by cardiothoracic surgery patients at NYP, were developed using topic modeling approaches and text analysis techniques. Embodied in a prototype called Remedy, they enable rapid filtering and comparison of medication-related search results, based on a number of website features and content topics. I conclude by discussing how findings from this series of studies can help shape the ongoing design and development of patient-centered technology

Digital early warning scores in cardiac care settings: Mixed-methods research

The broad adoption of the National Early Warning Score (NEWS2) was formally endorsed for prediction of early deterioration across all settings. With current digitalisation of the Early Warning Score (EWS) through electronic health records (EHR) and automated patient monitoring, there is an excellent opportunity for facilitating and evaluating NEWS2 implementation. However, no evidence yet shows the success of such standardisation or digitalisation of EWS in cardiac care settings. Individuals with cardiovascular disease (CVD) have a significant risk of developing critical events, and CVD-related morbidity is a critical burden for health and social care. However, there is a gap in research evaluating the performance and implementation of EWS in cardiac settings and the role of digital solutions in the implementation and performance of EWS and clinicians' practice. This PhD aims to provide high-quality evidence on the effectiveness of NEWS2 in predicting worsening events in patients with CVD, the implementation of the digital NEWS2 in two healthcare settings, the experience of escalation of care during the COVID-19 pandemic, and the evaluation of EHR-integrated dashboard for auditing NEWS2 and clinicians' performance

Processamento automático de texto de narrativas clínicas

The informatization of medical systems and the subsequent move towards the usage of Electronic Health Records (EHR) over the paper format by medical professionals allowed for safer and more e cient healthcare. Additionally, EHR can also be used as a data source for observational studies around the world. However, it is estimated that 70-80% of all clinical data is in the form of unstructured free text and regarding the data that is structured, not all of it follows the same standards, making it di cult to use on the mentioned observational studies. This dissertation aims to tackle those two adversities using natural language processing for the task of extracting concepts from free text and, afterwards, use a common data model to harmonize the data. The developed system employs an annotator, namely cTAKES, to extract the concepts from free text. The extracted concepts are then normalized using text preprocessing, word embeddings, MetaMap and UMLS Metathesaurus lookup. Finally, the normalized concepts are converted to the OMOP Common Data Model and stored in a database. In order to test the developed system, the i2b2 2010 data set was used. The di erent components of the system were tested and evaluated separately, with the concept extraction component achieving a precision, recall and F-score of 77.12%, 70.29% and 73.55%, respectively. The normalization component was evaluated by completing the N2C2 2019 challenge track 3, where it achieved a 77.5% accuracy. Finally, during the OMOP CDM conversion component, it was observed that 7.92% of the concepts were lost during the process. In conclusion, even though the developed system still has margin for improvements, it proves to be a viable method of automatically processing clinical narratives.A informatização dos sistemas médicos e a subsequente tendência por parte de profissionais de saúde a substituir registos em formato de papel por registos eletrónicos de saúde, permitiu que os serviços de saúde se tornassem mais seguros e eficientes. Além disso, estes registos eletrónicos apresentam também o benefício de poderem ser utilizados como fonte de dados para estudos observacionais. No entanto, estima-se que 70-80% de todos os dados clínicos se encontrem na forma de texto livre não-estruturado e os dados que estão estruturados não seguem todos os mesmos padrões, dificultando o seu potencial uso nos estudos observacionais. Esta dissertação pretende solucionar essas duas adversidades através do uso de processamento de linguagem natural para a tarefa de extrair conceitos de texto livre e, de seguida, usar um modelo comum de dados para os harmonizar. O sistema desenvolvido utiliza um anotador, especificamente o cTAKES, para extrair conceitos de texto livre. Os conceitos extraídos são, então, normalizados através de técnicas de pré-processamento de texto, Word Embeddings, MetaMap e um sistema de procura no Metathesaurus do UMLS. Por fim, os conceitos normalizados são convertidos para o modelo comum de dados da OMOP e guardados numa base de dados. Para testar o sistema desenvolvido usou-se o conjunto de dados i2b2 de 2010. As diferentes partes do sistema foram testadas e avaliadas individualmente sendo que na extração dos conceitos obteve-se uma precisão, recall e F-score de 77.12%, 70.29% e 73.55%, respetivamente. A normalização foi avaliada através do desafio N2C2 2019-track 3 onde se obteve uma exatidão de 77.5%. Na conversão para o modelo comum de dados OMOP observou-se que durante a conversão perderam-se 7.92% dos conceitos. Concluiu-se que, embora o sistema desenvolvido ainda tenha margem para melhorias, este demonstrou-se como um método viável de processamento automático do texto de narrativas clínicas.Mestrado em Engenharia de Computadores e Telemátic

Pseudonymization and its Application to Cloud-based eHealth Systems

Responding to the security and privacy issues of information systems, we propose a novel pseudonym solution. This pseudonym solution has provable security to protect the identities of users by employing user-generated pseudonyms. It also provides an encryption scheme to protect the security of the users’ data stored in the public network. Moreover, the pseudonym solution also provides the authentication of pseudonyms without disclosing the users’ identity information. Thus the dependences on powerful trusted third parties and on the trustworthiness of system administrators may be appreciably alleviated. Electronic healthcare systems (eHealth systems), as one kind of everyday information system, with the ability to store and share patients’ health data efficiently, have to manage in-formation of an extremely personal nature. As a consequence of known cases of abuse and attacks, the security of the health data and the privacy of patients are a great concern for many people and thus becoming obstacles to the acceptance and spread of eHealth systems. In this thesis, we survey current eHealth systems in both research and practice, analyzing potential threats to the security and privacy. Cloud-based eHealth systems, in particular, enable applications with many new features in data storing and sharing. We analyze the new issues on security and privacy when cloud technology is introduced into eHealth systems. We demonstrate that our proposed pseudonym solution can be successfully applied to cloud-based eHealth systems. Firstly, we utilize the pseudonym scheme and encryption scheme for storing and retrieving the electronic health records (EHR) in the cloud. The identities of patients and the confidentiality of EHR contents are provably guaranteed by advanced cryptographic algorithms. Secondly, we utilize the pseudonym solution to protect the privacy of patients from the health insurance companies. Only necessary information about patients is disclosed to the health insurance companies, without interrupting the cur-rent normal business processes of health insurance. At last, based on the pseudonym solution, we propose a new procedure for the secondary use of the health data. The new procedure protects the privacy of patients properly and enables patients’ full control and clear consent over their health data to be secondarily used. A prototypical application of a cloud-based eHealth system implementing our proposed solution is presented in order to exhibit the practicability of the solution and to provide intuitive experiences. Some performance estimations of the proposed solution based on the implementation are also provided.Um gewisse Sicherheits- und Datenschutzdefizite heutiger Informationssysteme zu beheben, stellen wir eine neuartige Pseudonymisierungslösung vor, die benutzergenerierte Pseudonyme verwendet und die Identitäten der Pseudonyminhaber nachweisbar wirksam schützt. Sie beinhaltet neben der Pseudonymisierung auch ein Verschlüsselungsverfahren für den Schutz der Vertraulichkeit der Benutzerdaten, wenn diese öffentlich gespeichert werden. Weiterhin bietet sie ein Verfahren zur Authentisierung von Pseudonymen, das ohne die Offenbarung von Benutzeridentitäten auskommt. Dadurch können Abhängigkeiten von vertrauenswürdigen dritten Stellen (trusted third parties) oder von vertrauenswürdigen Systemadministratoren deutlich verringert werden. Elektronische Gesundheitssysteme (eHealth-Systeme) sind darauf ausgelegt, Patientendaten effizient zu speichern und bereitzustellen. Solche Daten haben ein extrem hohes Schutzbedürfnis, und bekannte Fälle von Angriffen auf die Vertraulichkeit der Daten durch Privilegienmissbrauch und externe Attacken haben dazu geführt, dass die Sorge um den Schutz von Gesundheitsdaten und Patientenidentitäten zu einem großen Hindernis für die Verbreitung und Akzeptanz von eHealth-Systemen geworden ist. In dieser Dissertation betrachten wir gegenwärtige eHealth-Systeme in Forschung und Praxis hinsichtlich möglicher Bedrohungen für Sicherheit und Vertraulichkeit der gespeicherten Daten. Besondere Beachtung finden cloudbasierte eHealth-Systeme, die Anwendungen mit neuartigen Konzepten zur Datenspeicherung und -bereitstellung ermöglichen. Wir analysieren Sicherheits- und Vertraulichkeitsproblematiken, die sich beim Einsatz von Cloud-Technologie in eHealth-Systemen ergeben. Wir zeigen, dass unsere Pseudonymisierungslösung erfolgreich auf cloudbasierte eHealth-Systeme angewendet werden kann. Dabei werden zunächst das Pseudonymisierungs- und das Verschlüsselungsverfahren bei der Speicherung und beim Abruf von elektronischen Gesundheitsdatensätzen (electronic health records, EHR) in der Cloud eingesetzt. Die Vertraulichkeit von Patientenidentitäten und EHR-Inhalten werden dabei durch den Einsatz moderner kryptografischer Algorithmen nachweisbar garantiert. Weiterhin setzen wir die Pseudonymisierungslösung zum Schutz der Privatsphäre der Patienten gegenüber Krankenversicherungsunternehmen ein. Letzteren werden lediglich genau diejenigen Patienteninformationen offenbart, die für den störungsfreien Ablauf ihrer Geschäftsprozesse nötig sind. Schließen schlagen wir eine neuartige Vorgehensweise für die Zweitverwertung der im eHealth-System gespeicherten Daten vor, die die Pseudonymisierungslösung verwendet. Diese Vorgehensweise bietet den Patienten angemessenen Schutz für ihre Privatsphäre und volle Kontrolle darüber, welche Daten für eine Zweitverwertung (z.B. für Forschungszwecke) freigegeben werden. Es wird ein prototypisches, cloudbasiertes eHealth-System vorgestellt, das die Pseudonymisierungslösung implementiert, um deren Praktikabilität zu demonstrieren und intuitive Erfahrungen zu vermitteln. Weiterhin werden, basierend auf der Implementierung, einige Abschätzungen der Performanz der Pseudonymisierungslösung angegeben

Blockchain for Healthcare: Securing Patient Data and Enabling Trusted Artificial Intelligence

Advances in information technology are digitizing the healthcare domain with the aim of improved medical services, diagnostics, continuous monitoring using wearables, etc., at reduced costs. This digitization improves the ease of computation, storage and access of medical records which enables better treatment experiences for patients. However, it comes with a risk of cyber attacks and security and privacy concerns on this digital data. In this work, we propose a Blockchain based solution for healthcare records to address the security and privacy concerns which are currently not present in existing e-Health systems. This work also explores the potential of building trusted Artificial Intelligence models over Blockchain in e-Health, where a transparent platform for consent-based data sharing is designed. Provenance of the consent of individuals and traceability of data sources used for building and training the AI model is captured in an immutable distributed data store. The audit trail of the data access captured using Blockchain provides the data owner to understand the exposure of the data. It also helps the user to understand the revenue models that could be built on top of this framework for commercial data sharing to build trusted AI models

Identity Management and Authorization Infrastructure in Secure Mobile Access to Electronic Health Records

We live in an age of the mobile paradigm of anytime/anywhere access, as the mobile device is the most ubiquitous device that people now hold. Due to their portability, availability, easy of use, communication, access and sharing of information within various domains and areas of our daily lives, the acceptance and adoption of these devices is still growing. However, due to their potential and raising numbers, mobile devices are a growing target for attackers and, like other technologies, mobile applications are still vulnerable. Health information systems are composed with tools and software to collect, manage, analyze and process medical information (such as electronic health records and personal health records). Therefore, such systems can empower the performance and maintenance of health services, promoting availability, readability, accessibility and data sharing of vital information about a patients overall medical history, between geographic fragmented health services. Quick access to information presents a great importance in the health sector, as it accelerates work processes, resulting in better time utilization. Additionally, it may increase the quality of care. However health information systems store and manage highly sensitive data, which raises serious concerns regarding patients privacy and safety, and may explain the still increasing number of malicious incidents reports within the health domain. Data related to health information systems are highly sensitive and subject to severe legal and regulatory restrictions, that aim to protect the individual rights and privacy of patients. Along side with these legislations, security requirements must be analyzed and measures implemented. Within the necessary security requirements to access health data, secure authentication, identity management and access control are essential to provide adequate means to protect data from unauthorized accesses. However, besides the use of simple authentication models, traditional access control models are commonly based on predefined access policies and roles, and are inflexible. This results in uniform access control decisions through people, different type of devices, environments and situational conditions, and across enterprises, location and time. Although already existent models allow to ensure the needs of the health care systems, they still lack components for dynamicity and privacy protection, which leads to not have desire levels of security and to the patient not to have a full and easy control of his privacy. Within this master thesis, after a deep research and review of the stat of art, was published a novel dynamic access control model, Socio-Technical Risk-Adaptable Access Control modEl (SoTRAACE), which can model the inherent differences and security requirements that are present in this thesis. To do this, SoTRAACE aggregates attributes from various domains to help performing a risk assessment at the moment of the request. The assessment of the risk factors identified in this work is based in a Delphi Study. A set of security experts from various domains were selected, to classify the impact in the risk assessment of each attribute that SoTRAACE aggregates. SoTRAACE was integrated in an architecture with requirements well-founded, and based in the best recommendations and standards (OWASP, NIST 800-53, NIST 800-57), as well based in deep review of the state-of-art. The architecture is further targeted with the essential security analysis and the threat model. As proof of concept, the proposed access control model was implemented within the user-centric architecture, with two mobile prototypes for several types of accesses by patients and healthcare professionals, as well the web servers that handles the access requests, authentication and identity management. The proof of concept shows that the model works as expected, with transparency, assuring privacy and data control to the user without impact for user experience and interaction. It is clear that the model can be extended to other industry domains, and new levels of risks or attributes can be added because it is modular. The architecture also works as expected, assuring secure authentication with multifactor, and secure data share/access based in SoTRAACE decisions. The communication channel that SoTRAACE uses was also protected with a digital certificate. At last, the architecture was tested within different Android versions, tested with static and dynamic analysis and with tests with security tools. Future work includes the integration of health data standards and evaluating the proposed system by collecting users’ opinion after releasing the system to real world.Hoje em dia vivemos em um paradigma móvel de acesso em qualquer lugar/hora, sendo que os dispositivos móveis são a tecnologia mais presente no dia a dia da sociedade. Devido à sua portabilidade, disponibilidade, fácil manuseamento, poder de comunicação, acesso e partilha de informação referentes a várias áreas e domínios das nossas vidas, a aceitação e integração destes dispositivos é cada vez maior. No entanto, devido ao seu potencial e aumento do número de utilizadores, os dispositivos móveis são cada vez mais alvos de ataques, e tal como outras tecnologias, aplicações móveis continuam a ser vulneráveis. Sistemas de informação de saúde são compostos por ferramentas e softwares que permitem recolher, administrar, analisar e processar informação médica (tais como documentos de saúde eletrónicos). Portanto, tais sistemas podem potencializar a performance e a manutenção dos serviços de saúde, promovendo assim a disponibilidade, acessibilidade e a partilha de dados vitais referentes ao registro médico geral dos pacientes, entre serviços e instituições que estão geograficamente fragmentadas. O rápido acesso a informações médicas apresenta uma grande importância para o setor da saúde, dado que acelera os processos de trabalho, resultando assim numa melhor eficiência na utilização do tempo e recursos. Consequentemente haverá uma melhor qualidade de tratamento. Porém os sistemas de informação de saúde armazenam e manuseiam dados bastantes sensíveis, o que levanta sérias preocupações referentes à privacidade e segurança do paciente. Assim se explica o aumento de incidentes maliciosos dentro do domínio da saúde. Os dados de saúde são altamente sensíveis e são sujeitos a severas leis e restrições regulamentares, que pretendem assegurar a proteção dos direitos e privacidade dos pacientes, salvaguardando os seus dados de saúde. Juntamente com estas legislações, requerimentos de segurança devem ser analisados e medidas implementadas. Dentro dos requerimentos necessários para aceder aos dados de saúde, uma autenticação segura, gestão de identidade e controlos de acesso são essenciais para fornecer meios adequados para a proteção de dados contra acessos não autorizados. No entanto, além do uso de modelos simples de autenticação, os modelos tradicionais de controlo de acesso são normalmente baseados em políticas de acesso e cargos pré-definidos, e são inflexíveis. Isto resulta em decisões de controlo de acesso uniformes para diferentes pessoas, tipos de dispositivo, ambientes e condições situacionais, empresas, localizações e diferentes alturas no tempo. Apesar dos modelos existentes permitirem assegurar algumas necessidades dos sistemas de saúde, ainda há escassez de componentes para accesso dinâmico e proteção de privacidade , o que resultam em níveis de segurança não satisfatórios e em o paciente não ter controlo directo e total sobre a sua privacidade e documentos de saúde. Dentro desta tese de mestrado, depois da investigação e revisão intensiva do estado da arte, foi publicado um modelo inovador de controlo de acesso, chamado SoTRAACE, que molda as diferenças de acesso inerentes e requerimentos de segurança presentes nesta tese. Para isto, o SoTRAACE agrega atributos de vários ambientes e domínios que ajudam a executar uma avaliação de riscos, no momento em que os dados são requisitados. A avaliação dos fatores de risco identificados neste trabalho são baseados num estudo de Delphi. Um conjunto de peritos de segurança de vários domínios industriais foram selecionados, para classificar o impacto de cada atributo que o SoTRAACE agrega. O SoTRAACE foi integrado numa arquitectura para acesso a dados médicos, com requerimentos bem fundados, baseados nas melhores normas e recomendações (OWASP, NIST 800-53, NIST 800-57), e em revisões intensivas do estado da arte. Esta arquitectura é posteriormente alvo de uma análise de segurança e modelos de ataque. Como prova deste conceito, o modelo de controlo de acesso proposto é implementado juntamente com uma arquitetura focada no utilizador, com dois protótipos para aplicações móveis, que providênciam vários tipos de acesso de pacientes e profissionais de saúde. A arquitetura é constituída também por servidores web que tratam da gestão de dados, controlo de acesso e autenticação e gestão de identidade. O resultado final mostra que o modelo funciona como esperado, com transparência, assegurando a privacidade e o controlo de dados para o utilizador, sem ter impacto na sua interação e experiência. Consequentemente este modelo pode-se extender para outros setores industriais, e novos níveis de risco ou atributos podem ser adicionados a este mesmo, por ser modular. A arquitetura também funciona como esperado, assegurando uma autenticação segura com multi-fator, acesso e partilha de dados segura baseado em decisões do SoTRAACE. O canal de comunicação que o SoTRAACE usa foi também protegido com um certificado digital. A arquitectura foi testada em diferentes versões de Android, e foi alvo de análise estática, dinâmica e testes com ferramentas de segurança. Para trabalho futuro está planeado a integração de normas de dados de saúde e a avaliação do sistema proposto, através da recolha de opiniões de utilizadores no mundo real