Archetype development and governance methodologies for the electronic health record

[ES] La interoperabilidad semántica de la información sanitaria es un requisito imprescindible para la sostenibilidad de la atención sanitaria, y es fundamental para afrontar los nuevos retos sanitarios de un mundo globalizado. Esta tesis aporta nuevas metodologías para abordar algunos de los aspectos fundamentales de la interoperabilidad semántica, específicamente aquellos relacionados con la definición y gobernanza de modelos de información clínica expresados en forma de arquetipo. Las aportaciones de la tesis son: - Estudio de las metodologías de modelado existentes de componentes de interoperabilidad semántica que influirán en la definición de una metodología de modelado de arquetipos. - Análisis comparativo de los sistemas e iniciativas existentes para la gobernanza de modelos de información clínica. - Una propuesta de Metodología de Modelado de Arquetipos unificada que formalice las fases de desarrollo del arquetipo, los participantes requeridos y las buenas prácticas a seguir. - Identificación y definición de principios y características de gobernanza de arquetipos. - Diseño y desarrollo de herramientas que brinden soporte al modelado y la gobernanza de arquetipos. Las aportaciones de esta tesis se han puesto en práctica en múltiples proyectos y experiencias de desarrollo. Estas experiencias varían desde un proyecto local dentro de una sola organización que requirió la reutilización de datos clínicos basados en principios de interoperabilidad semántica, hasta el desarrollo de proyectos de historia clínica electrónica de alcance nacional.[CA] La interoperabilitat semàntica de la informació sanitària és un requisit imprescindible per a la sostenibilitat de l'atenció sanitària, i és fonamental per a afrontar els nous reptes sanitaris d'un món globalitzat. Aquesta tesi aporta noves metodologies per a abordar alguns dels aspectes fonamentals de la interoperabilitat semàntica, específicament aquells relacionats amb la definició i govern de models d'informació clínica expressats en forma d'arquetip. Les aportacions de la tesi són: - Estudi de les metodologies de modelatge existents de components d'interoperabilitat semàntica que influiran en la definició d'una metodologia de modelatge d'arquetips. - Anàlisi comparativa dels sistemes i iniciatives existents per al govern de models d'informació clínica. - Una proposta de Metodologia de Modelatge d'Arquetips unificada que formalitza les fases de desenvolupament de l'arquetip, els participants requerits i les bones pràctiques a seguir. - Identificació i definició de principis i característiques de govern d'arquetips. - Disseny i desenvolupament d'eines que brinden suport al modelatge i al govern d'arquetips. Les aportacions d'aquesta tesi s'han posat en pràctica en múltiples projectes i experiències de desenvolupament. Aquestes experiències varien des d'un projecte local dins d'una sola organització que va requerir la reutilització de dades clíniques basades en principis d'interoperabilitat semàntica, fins al desenvolupament de projectes d'història clínica electrònica d'abast nacional.[EN] Semantic interoperability of health information is an essential requirement for the sustainability of healthcare, and it is essential to face the new health challenges of a globalized world. This thesis provides new methodologies to tackle some of the fundamental aspects of semantic interoperability, specifically those aspects related to the definition and governance of clinical information models expressed in the form of archetypes. The contributions of the thesis are: - Study of existing modeling methodologies of semantic interoperability components that will influence in the definition of an archetype modeling methodology. - Comparative analysis of existing clinical information model governance systems and initiatives. - A proposal of a unified Archetype Modeling Methodology that formalizes the phases of archetype development, the required participants, and the good practices to be followed. - Identification and definition of archetype governance principles and characteristics. - Design and development of tools that provide support to archetype modeling and governance. The contributions of this thesis have been put into practice in multiple projects and development experiences. These experiences vary from a local project inside a single organization that required a reuse on clinical data based on semantic interoperability principles, to the development of national electronic health record projects.This thesis was partially funded by the Ministerio de Economía y Competitividad, ayudas para contratos para la formación de doctores en empresas “Doctorados Industriales”, grant DI-14-06564 and by the Agencia Valenciana de la Innovación, ayudas del Programa de Promoción del Talento – Doctorados empresariales (INNODOCTO), grant INNTA3/2020/12.Moner Cano, D. (2021). Archetype development and governance methodologies for the electronic health record [Tesis doctoral]. Universitat Politècnica de València. https://doi.org/10.4995/Thesis/10251/16491

Combining multivariate statistics and the think-aloud protocol to assess Human-Computer Interaction barriers in symptom checkers

[EN] Symptom checkers are software tools that allow users to submit a set of symptoms and receive advice related to them in the form of a diagnosis list, health information or triage. The heterogeneity of their potential users and the number of different components in their user interfaces can make testing with end-users unaffordable. We designed and executed a two-phase method to test the respiratory diseases module of the symptom checker Erdusyk. Phase I consisted of an online test with a large sample of users (n = 53). In Phase I, users evaluated the system remotely and completed a questionnaire based on the Technology Acceptance Model. Principal Component Analysis was used to correlate each section of the interface with the questionnaire responses, thus identifying which areas of the user interface presented significant contributions to the technology acceptance. In the second phase, the think-aloud procedure was executed with a small number of samples (n = 15), focusing on the areas with significant contributions to analyze the reasons for such contributions. Our method was used effectively to optimize the testing of symptom checker user interfaces. The method allowed kept the cost of testing at reasonable levels by restricting the use of the think-aloud procedure while still assuring a high amount of coverage. The main barriers detected in Erdusyk were related to problems understanding time repetition patterns, the selection of levels in scales to record intensities, navigation, the quantification of some symptom attributes, and the characteristics of the symptoms. (C) 2017 Elsevier Inc. All rights reserved.This work was supported by Helse Nord [grant HST1121-13], the Faculty of Health Sciences from UIT The Arctic University of Norway [researcher code 1108], and The Research Council of Norway [grant 248150/O70]. We thank Professor Emeritus Rafael Romero-Villafranca for reviewing the statistical analysis of this paper.Marco-Ruiz, L.; Bones, E.; De La Asuncion, E.; Gabarron, E.; Aviles-Solis, JC.; Lee, E.; Traver Salcedo, V.... (2017). Combining multivariate statistics and the think-aloud protocol to assess Human-Computer Interaction barriers in symptom checkers. Journal of Biomedical Informatics. 74:104-122. https://doi.org/10.1016/j.jbi.2017.09.002S1041227

Front-Line Physicians' Satisfaction with Information Systems in Hospitals

Day-to-day operations management in hospital units is difficult due to continuously varying situations, several actors involved and a vast number of information systems in use. The aim of this study was to describe front-line physicians' satisfaction with existing information systems needed to support the day-to-day operations management in hospitals. A cross-sectional survey was used and data chosen with stratified random sampling were collected in nine hospitals. Data were analyzed with descriptive and inferential statistical methods. The response rate was 65 % (n = 111). The physicians reported that information systems support their decision making to some extent, but they do not improve access to information nor are they tailored for physicians. The respondents also reported that they need to use several information systems to support decision making and that they would prefer one information system to access important information. Improved information access would better support physicians' decision making and has the potential to improve the quality of decisions and speed up the decision making process.Peer reviewe

Ontology driven clinical decision support for early diagnostic recommendations

Diagnostic error is a significant problem in medicine and a major cause of concern for patients and clinicians and is associated with moderate to severe harm to patients. Diagnostic errors are a primary cause of clinical negligence and can result in malpractice claims. Cognitive errors caused by biases such as premature closure and confirmation bias have been identified as major cause of diagnostic error. Researchers have identified several strategies to reduce diagnostic error arising from cognitive factors. This includes considering alternatives, reducing reliance on memory, providing access to clear and well-organized information. Clinical Decision Support Systems (CDSSs) have been shown to reduce diagnostic errors. Clinical guidelines improve consistency of care and can potentially improve healthcare efficiency. They can alert clinicians to diagnostic tests and procedures that have the greatest evidence and provide the greatest benefit. Clinical guidelines can be used to streamline clinical decision making and provide the knowledge base for guideline based CDSSs and clinical alert systems. Clinical guidelines can potentially improve diagnostic decision making by improving information gathering. Argumentation is an emerging area for dealing with unstructured evidence in domains such as healthcare that are characterized by uncertainty. The knowledge needed to support decision making is expressed in the form of arguments. Argumentation has certain advantages over other decision support reasoning methods. This includes the ability to function with incomplete information, the ability to capture domain knowledge in an easy manner, using non-monotonic logic to support defeasible reasoning and providing recommendations in a manner that can be easily explained to clinicians. Argumentation is therefore a suitable method for generating early diagnostic recommendations. Argumentation-based CDSSs have been developed in a wide variety of clinical domains. However, the impact of an argumentation-based diagnostic Clinical Decision Support System (CDSS) has not been evaluated yet. The first part of this thesis evaluates the impact of guideline recommendations and an argumentation-based diagnostic CDSS on clinician information gathering and diagnostic decision making. In addition, the impact of guideline recommendations on management decision making was evaluated. The study found that argumentation is a viable method for generating diagnostic recommendations that can potentially help reduce diagnostic error. The study showed that guideline recommendations do have a positive impact on information gathering of optometrists and can potentially help optometrists in asking the right questions and performing tests as per current standards of care. Guideline recommendations were found to have a positive impact on management decision making. The CDSS is dependent on quality of data that is entered into the system. Faulty interpretation of data can lead the clinician to enter wrong data and cause the CDSS to provide wrong recommendations. Current generation argumentation-based CDSSs and other diagnostic decision support systems have problems with semantic interoperability that prevents them from using data from the web. The clinician and CDSS is limited to information collected during a clinical encounter and cannot access information on the web that could be relevant to a patient. This is due to the distributed nature of medical information and lack of semantic interoperability between healthcare systems. Current argumentation-based decision support applications require specialized tools for modelling and execution and this prevents widespread use and adoption of these tools especially when these tools require additional training and licensing arrangements. Semantic web and linked data technologies have been developed to overcome problems with semantic interoperability on the web. Ontology-based diagnostic CDSS applications have been developed using semantic web technology to overcome problems with semantic interoperability of healthcare data in decision support applications. However, these models have problems with expressiveness, requiring specialized software and algorithms for generating diagnostic recommendations. The second part of this thesis describes the development of an argumentation-based ontology driven diagnostic model and CDSS that can execute this model to generate ranked diagnostic recommendations. This novel model called the Disease-Symptom Model combines strengths of argumentation with strengths of semantic web technology. The model allows the domain expert to model arguments favouring and negating a diagnosis using OWL/RDF language. The model uses a simple weighting scheme that represents the degree of support of each argument within the model. The model uses SPARQL to sum weights and produce a ranked diagnostic recommendation. The model can provide justifications for each recommendation in a manner that clinicians can easily understand. CDSS prototypes that can execute this ontology model to generate diagnostic recommendations were developed. The decision support prototypes demonstrated the ability to use a wide variety of data and access remote data sources using linked data technologies to generate recommendations. The thesis was able to demonstrate the development of an argumentation-based ontology driven diagnostic decision support model and decision support system that can integrate information from a variety of sources to generate diagnostic recommendations. This decision support application was developed without the use of specialized software and tools for modelling and execution, while using a simple modelling method. The third part of this thesis details evaluation of the Disease-Symptom model across all stages of a clinical encounter by comparing the performance of the model with clinicians. The evaluation showed that the Disease-Symptom Model can provide a ranked diagnostic recommendation in early stages of the clinical encounter that is comparable to clinicians. The diagnostic performance can be improved in the early stages using linked data technologies to incorporate more information into the decision making. With limited information, depending on the type of case, the performance of the Disease-Symptom Model will vary. As more information is collected during the clinical encounter the decision support application can provide recommendations that is comparable to clinicians recruited for the study. The evaluation showed that even with a simple weighting and summation method used in the Disease- Symptom Model the diagnostic ranking was comparable to dentists. With limited information in the early stages of the clinical encounter the Disease-Symptom Model was able to provide an accurately ranked diagnostic recommendation validating the model and methods used in this thesis

Creating archetypes for patient assessment with nurses to facilitate shared patient centred care in the older person

The process of what information is captured in documenting patient care assessment and how it is summarised, communicated and interpreted by nurses across different healthcare services is the main focus of this thesis. Currently in Ireland, systems within the domain of healthcare are undergoing transformation. Existing practices where health information is collected at one local health organisation level and often duplicated across differing services will not support the strategic goals of the newly established clinical directorates. The political vision is simple: Ireland must move towards a nationally integrated electronic record to support patient centred care. Whilst the political vision may be simple, the process of implementation is not and forms the main topic of this thesis. Strategic goals to move nationally towards integrated electronic records are motivated by the global concerns of an ageing population associated with an increase in the prevalence of chronic illness and co-morbidity. The main objective of this thesis is to evaluate the impact of a pilot study which identified the semantic and syntactic clinical requirements for the testing and implementation of a shared discharge/transfer summary assessment record for persons over the age of 65. This summary record was designed in accordance with ISO 13606, the International standard for Electronic Healthcare Record (EHR) communication and is underpinned by ISO 18104, the international standard for Categorial Structures for Representation of Nursing Diagnosis and Nursing Actions in Terminological Systems. A participatory action research approach was adopted, using an exploratory mixed methods research study design. This translational study was completed in two local health organisation areas in Dublin with six service providers across the primary, acute and continuing care services over a two year period. The qualitative element of the study involved 17 interviews, 7 focus group sessions with participants including policy makers and nurses from each of the participating services. Quantitative data included questionnaires from nurses (n = 14) and patients (n=5) evaluating the effectiveness of the summary record. The quantitative data also analysed information from a set of cumulative assessment records (n = 16) which were interpreted in tandem with the qualitative data and then analysed statistically. The shared discharge/transfer summary care record was piloted on 16 patients over an extended timeframe. The quantitative data showed a statistical significance commensurate with the qualitative data collected on patient participants. An evaluation of the pilot study produced qualitative data which was used to gain insight into the differing contexts that healthcare professionals practice within. This data was illustrated in graphical configurations to make evident to policy makers the various roles that nurses engage with in the course of their care delivery. Data collected from both the qualitative and quantitative analysis suggest that the test implementation of the record template was fit for purpose. Identification of the clinical requirements and testing of the summary record over a two year period was a labour intensive process which was logistically difficult to implement. One consequence of this study was the education of the nursing participants on gaining a common understanding of what needs to be measured in patient assessment to inform future theory testing for outcome based research. A second consequence was the empowerment of the nursing participants to develop archetypes for inclusion in future electronic healthcare records in Ireland. The prototype archetypes designed for assessment of the older person in this study are at present informing a number of practical applications within the nursing community in Ireland. Over the course of the study the participatory action research design altered in its focus and emerged as a dominant qualitative mixed methods study

Intégration de ressources en recherche translationnelle : une approche unificatrice en support des systèmes de santé "apprenants"

Learning health systems (LHS) are gradually emerging and propose a complimentary approach to translational research challenges by implementing close coupling of health care delivery, research and knowledge translation. To support coherent knowledge sharing, the system needs to rely on an integrated and efficient data integration platform. The framework and its theoretical foundations presented here aim at addressing this challenge. Data integration approaches are analysed in light of the requirements derived from LHS activities and data mediation emerges as the one most adapted for a LHS. The semantics of clinical data found in biomedical sources can only be fully derived by taking into account, not only information from the structural models (field X of table Y), but also terminological information (e.g. International Classification of Disease 10th revision) used to encode facts. The unified framework proposed here takes this into account. The platform has been implemented and tested in context of the TRANSFoRm endeavour, a European project funded by the European commission. It aims at developing a LHS including clinical activities in primary care. The mediation model developed for the TRANSFoRm project, the Clinical Data Integration Model, is presented and discussed. Results from TRANSFoRm use-cases are presented. They illustrate how a unified data sharing platform can support and enhance prospective research activities in context of a LHS. In the end, the unified mediation framework presented here allows sufficient expressiveness for the TRANSFoRm needs. It is flexible, modular and the CDIM mediation model supports the requirements of a primary care LHS.Les systèmes de santé "apprenants" (SSA) présentent une approche complémentaire et émergente aux problèmes de la recherche translationnelle en couplant de près les soins de santé, la recherche et le transfert de connaissances. Afin de permettre un flot d’informations cohérent et optimisé, le système doit se doter d’une plateforme intégrée de partage de données. Le travail présenté ici vise à proposer une approche de partage de données unifiée pour les SSA. Les grandes approches d’intégration de données sont analysées en fonction du SSA. La sémantique des informations cliniques disponibles dans les sources biomédicales est la résultante des connaissances des modèles structurelles des sources mais aussi des connaissances des modèles terminologiques utilisés pour coder l’information. Les mécanismes de la plateforme unifiée qui prennent en compte cette interdépendance sont décrits. La plateforme a été implémentée et testée dans le cadre du projet TRANSFoRm, un projet européen qui vise à développer un SSA. L’instanciation du modèle de médiation pour le projet TRANSFoRm, le Clinical Data Integration Model est analysée. Sont aussi présentés ici les résultats d’un des cas d’utilisation de TRANSFoRm pour supporter la recherche afin de donner un aperçu concret de l’impact de la plateforme sur le fonctionnement du SSA. Au final, la plateforme unifiée d’intégration proposée ici permet un niveau d’expressivité suffisant pour les besoins de TRANSFoRm. Le système est flexible et modulaire et le modèle de médiation CDIM couvre les besoins exprimés pour le support des activités d’un SSA comme TRANSFoRm