Em 2005, a Agência Nacional de Saúde Suplementar (ANS) estabelece o padrão TISS (Troca de Informação na Saúde Suplementar), intercâmbio eletrônico obrigatório entre as operadoras de planos de saúde (cerca de 1500 registradas na ANS) e prestadores de serviços (cerca de 200 mil) sobre os eventos de assistência prestados aos beneficiários. O padrão TISS foi desenvolvido seguindo a estrutura do Comitê ISO/TC215 de padrões para informática em saúde e se divide em quatro partes: conteúdo e estrutura, que compreende a estrutura das guias em papel; representação de conceitos em saúde, que se refere às tabelas de domínio e vocabulários em saúde; comunicação, que contempla as mensagens eletrônicas; e segurança e privacidade, seguindo recomendação do Conselho Federal de Medicina (CFM). Para aprimorar sua metodologia de evolução, essa presente tese analisou o grau de interoperabilidade do padrão TISS segundo a norma ISO 20514 (ISO 20514, 2005) e a luz do modelo dual da Fundação openEHR, que propõe padrões abertos para arquitetura e estrutura do Registro Eletrônico de Saúde (RES). O modelo dual da Fundação openEHR é composto, no primeiro nível, por um modelo de referência genérico e, no segundo, por um modelo de arquétipos, onde se detalham os conceitos e atributos. Dois estudos foram realizados: o primeiro se refere a um conjunto de arquétipos demográficos elaborados como proposta de representação da informação demográfica em saúde, baseado no modelo de referência da Fundação openEHR. O segundo estudo propõe um modelo de referência genérico, como aprimoramento das especificações da Fundação openEHR, para representar o conceito de submissão de autorização e contas na saúde, assim como um conjunto de arquétipos. Por fim, uma nova arquitetura para construção do padrão TISS é proposta, tendo como base o modelo dual da Fundação openEHR e como horizonte a evolução para o RES centrado no paciente / In 2005 the Brazilian National Healthcare Agency (Agência Nacional de Saúde Suplementar (ANS), in Portuguese) published the TISS standard, a mandatory electronic exchange claims between the health insurance (approximately 1500 registered at ANS) and healthcare providers (approximately 200 000) about the healthcare events provided to the beneficiaries. The TISS standard was developed following the structure of the ISO/TC215 Committee for Health Informatics and is divided into four parts: data structure that encompasses the forms; semantic content that refers to the vocabularies and terminologies; data interchange that includes the electronic messages; and security issues in healthcare information following a recommendation of the Federal Council of Medicine (Conselho Federal de Medicina (CFM), in Portuguese). To improve the TISS standards evolution, this study analyses the levels of interoperability in accordance with ISO 20514 (ISO 20514, 2005) and the dual model of the openEHR Foundation, which proposes open standards for Electronic Health Records (EHR) architecture and healthcare information. The dual model of the openEHR Foundation specifications is composed, on the first level, by a generic reference model and on the second by an archetype model that details the concepts and attributes. Two studies were conducted in this thesis: the first one refers to a set of demographic archetypes developed as a proposal representation of the demographic information, based on the reference model of the openEHR Foundation. The second study proposes a generic reference model, as an improvement of the openEHR specifications, to represent the concept of submission of claims, as well as a set of archetypes. Finally, a new architecture for building the TISS standard is proposed based on the dual model of the openEHR Foundation and envisioning a patient-centered EHR

Introdução: A Atenção Básica do Sistema Único de Saúde SUS é definida pelo Ministério da Saúde como um conjunto de ações e serviços de saúde no âmbito individual e coletivo, desenvolvidos com práticas gerenciais, sanitárias e sociais participativas, através de ações complexas nos cuidados e atenção à saúde da população do seu território e fundamentada nos princípios da universalidade, integralidade e da eqüidade. Os sistemas de informática em saúde da atenção básica são tecnologias estratégicas na gestão e governança sobre a situação de saúde da população em cada nível de responsabilidade sanitária. O cerne de funcionamento dos sistemas de informática é o software. A literatura pesquisada relata que os softwares dos sistemas de informática em saúde apresentam vários aspectos: inflexibilidade para mudanças, altos custos, baixa eficácia, são frágeis em relação à segurança e a privacidade, não adotam padrões tecnológicos e de saúde, apresentam dificuldades na escalabilidade, são refratários a adaptações às culturas e línguas locais e induzem ao aprisionamento tecnológico dos sistemas de informação em saúde. Neste contexto, o objetivo deste estudo foi o de identificar e analisar quais são as contribuições e limitações do software livre para os sistemas de informática e informação na atenção básica do SUS. Metodologia: Estudo de caso exploratório e qualitativo, comparando dois municípios que utilizam software livre e software privativo nos sistemas de atenção básica do SUS, a partir de critérios obtidos na literatura pesquisada. Resultados: A utilização de software livre nos sistemas de atenção básica do SUS de Campinas e São Paulo apresentou limites nos seguintes tópicos, utilizados como critérios de análise: educação, segurança, privacidade e padrões abertos. A utilização do software livre demonstrou vantagens para os municípios estudados nos seguintes tópicos: custos, escalabilidade, autonomia tecnológica, adaptação do software ao idioma e à cultura local, estabilidade e impacto na qualidade dos serviços de saúde. Conclusão: O software livre é uma alternativa tecnológica viável, robusta e flexível e oferece novas perspectivas para a construção de sistemas de informática e informação da Atenção Básica em saúde / The Primary Health Care of the Brazilian Unified National Health System (SUS) is defined by the Health Ministry as a set of actions and services in the individual and collective scopes developed through managerial sanitary and social participative practices by means of complex actions in the attention and care of thee health of the population within their territory based on the principles of universality, integrality and equity . The health informatics system of the basic attention are strategic tools of management and managery of the health status of the population at each level of sanitary responsibility. The core of operation of the informatics system is the software .The researched literature reports the health and informatics system software to present inflexibility for change, high cost and low efficacy, fragility concerning privacy and safety, lack of technological and health patterns and difficulties in scalability . The software is also depicted as being refractory to local languages and cultures, and to induce technological trap of the health informatics systems. Within this context the aim of the study was the identification and analysis of the contributions and limitations of free software for the informatics and information systems of the primary health of SUS. METODOLOGY: Exploratory qualitative study comparing two municipalities making use of free software and private software in their SUS primary health system based on the criteria obtained from the literary review. RESULTS: The use of free software in the basic attention of the SUS of Campinas and São Paulo presents limitations in the following topics used as analysis criteria: education, safety, privacy and open patterns. The use of free software proved advantageous for the surveyed municipalities in the following topics: costs, scalability, technologic autonomy, stability, adaptation of the software to the local language and culture and impact on the quality of health services. CONCLUSION: Free software is a viable, robust and flexible technological alternative that offers new perspectives for th construction of information and informatics systems of the primary health care.

Sedan införandet av datoriserade patientjournalsystem och sammanhållen journalföring har det riktats kritik mot hälso- och sjukvårdens hantering av patientinformation. Det råder delade meningar om det är användare eller systemen som felar. Syftet med undersökningen är att inspektera utvalda funktioner i journalsystemet TakeCare som utvecklats för att upprätthålla patient- och informationssäkerhet. Genom att jämföra funktionerna med Socialstyrelsens uppsatta informationssäkerhetskrav har uppsatsen som mål att hitta var de påtalade problemen kan uppstå. Genom att fråga användare kring deras uppfattning om systemet är avsikten att få en förståelse av om problemet ligger i de tekniska funktionerna eller i hanteringen av systemet. Metoder som använts under arbetet är e-postintervjuer och ett studiebesök på Stockholms läns landstings IT-avdelning i form av en intervju och presentation av TakeCare. Vi har sett att det finns funktioner som tar hänsyn till samtliga informationssäkerhetskrav samt att användarna anser att de kan hantera systemet, men trots det kritiseras informationshanteringen inom sjukvården. Utifrån vår undersökning anser vi att problem uppstår när obehöriga tar beslutet att ta del av information, vilket inte är ett resultat av systemets tillkortakommande. Vi anser att vårdpersonal har ansvar för patientens säkerhet oavsett om det gäller hantering av systemet eller vård av patienten. / Since the introduction of computerized health record systems and unified record-keeping, the health care management of patient information has been criticized. There are divided opinions about whether or not the users or the systems that is imperfect. The survey aims to inspect selected features of the health record system TakeCare developed to maintain patient and information security. By comparing the functions to information security requirements established by Socialstyrelsen, the paper aims to find where the noted problems can arise. By asking users about their view, we intend to find an understanding for whether the problems occur in the technical functions or in the use of the system. Used methods are e-mail interviews and a study visit to Stockholm County Council's department for IT in form of an interview and presentation of TakeCare. We have observed that there are functions that take information security requirements into account and that the users believe they can manage the system, but nevertheless health care’s way of handling information is criticized. Based on our study, we believe that the problem occurs when an unauthorized person makes the decision to take part of information, which is not a result of the system's shortcomings. We believe that health care professionals are responsible for the patient’s safety, whether it's usage of the system or care of the patient.

This PhD thesis explored the experiences of dependent children and children care-givers facing challenges with their parent s cancer. The aim was to understand children s information experience including their perception of cancer and information culture; information needs, information seeking behaviour, barriers and enablers. The research used a six-stage process. This was informed by an extensive literature review and discussions with cancer specialists, psychologists and researchers from United Kingdom, United States, Australia and Malaysia. This study used a three-cycle, eight-step process of Participative Action Research (PAR) with participation from ten Malay breast cancer patients and their dependent children. Three bilingual (English and Bahasa Malaysia) instruments were developed; 1) An Inquiry to Participate Form to select participants who had dependent children, 2) Three opened-ended questions to obtain children s cancer experience and information needs where drawing was used to encourage children s responses and, 3) A 15-question questionnaire to understand children s experience and information preference. Cancer affected parenting abilities and challenging experiences identified the lack of culturally relevant information and the shift in caregiving responsibilities to dependent children. Children s understanding of cancer was influenced by their experiences and observations, many of which resulted in misconceptions about cancer, its causes, treatment and preventative measures. Children participant s reaction to a health situation triggered their information behaviour. The burden of caregiving and the consequences of a lack of information were greater than anticipated; children had many dimensions of concern and experienced many challenges. This advocated for a more assessable, attractive and sensitive information system. Data synthesis contributed to the development of a Children s Reactive Information Seeking Behaviour An Integrated Model that seeks to explain the relationship between children participants reaction to a health situation and the subsequent processes they undergo to resolve their state of information need.

<div>Adolescent collision-sport athletes may be exposed to repetitive head impacts over years of practices and competitions without immediately observable symptoms. Despite the growing concerns, these athletes often continue play while at risk. Concrete objective measurements are desired to inform prompt and effective preventative strategies for this vulnerable population. However, adolescent brains are rapidly developing and the accrual of brain injury is often subtle. Prospective screening with sensitive biomarkers is challenging and requires advanced technologies, rigorous data processing, and the interdisciplinary expertise of engineering, neurobiology, and cognitive sciences.</div><div><br></div><div>To address the challenge, we first developed population-specific brain atlases to facilitate reproducible and meaningful statistical analyses. The atlases better characterized the neuroanatomy of early-to-middle adolescent (ages 13-19) collision-sport athletes, reduced deformation introduced during spatial normalization, and exhibited higher sensitivity in image analysis compared to standardized adult or age-appropriate brain templates. The atlases can be further applied to monitor the neuroanatomical trajectory and can serve as a coordinate reference system to retrospectively harmonize data collected from different sites and imaging acquisition parameters, facilitating group analysis at large scale.</div><div><br></div><div>Next, to assess whether the changes of white matter microstructure can be attributed to repetitive head impacts and are reflected by cognitive performance, we analysed the diffusion tensor imaging (DTI) data of high school men’s football and women's soccer across a single season, with accompanying data from head impact sensors and neurocognitive assessments. Within multiple brain regions, we observed significantly altered DTI metrics, both transiently over a season and chronically with more years of high school experience. For the football players, hits with peak translational acceleration over 37 <i>g</i> were sufficient to alter the distributions of DTI changes, and deficits in white matter microstructure correlated with poorer performance of anti-saccade task at one month post-season, suggesting increased vulnerability for inhibitory control. Monitoring repetitive head impacts thus provides a temporal profile for identifying at-risk individuals during the competitive season, informing prompt interventional strategies, therefore protecting the brain and cognitive health of early-to-middle adolescent collision-sport athletes in the long run.</div>

Recent advances in information and communication technologies have made the development and operation of complex disease surveillance systems technically feasible, and many systems have been proposed to interpret diverse data sources for health-related signals. Implementing these systems for daily use and efficiently interpreting their output, however, remains a technical challenge. This thesis presents a method for understanding disease surveillance systems structurally, examines four existing systems, and discusses the implications of developing such systems. The discussion is followed by two papers. The first paper describes the design of a national outbreak detection system for daily disease surveillance. It is currently in use at the Swedish Institute for Communicable Disease Control. The source code has been licenced under GNU v3 and is freely available. The second paper discusses methodological issues in computational epidemiology, and presents the lessons learned from a software development project in which a spatially explicit micro-meso-macro model for the entire Swedish population was built based on registry data. / QC 20110520

<p>Predictive modeling in healthcare involves the development of data-driven and computational models which can predict what will happen, be it for a single individual or for an entire system. The adoption of predictive models can guide various stakeholders’ decision-making in the healthcare sector, and consequently improve individual outcomes and the cost-effectiveness of care. With the rapid development in healthcare of big data and the Internet of Things technologies, research in healthcare decision-making has grown in both importance and complexity. One of the complexities facing those who would build predictive models is heterogeneity of patient populations, clinical practices, and intervention outcomes, as well as from diverse health systems. There are many sub-domains in healthcare for which predictive modeling is useful such as disease risk modeling, clinical intelligence, pharmacovigilance, precision medicine, hospitalization process optimization, digital health, and preventive care. In my dissertation, I focus on predictive modeling for applications that fit into three broad and important domains of healthcare, namely clinical practice, public health, and healthcare system. In this dissertation, I present three papers that present a collection of predictive modeling studies to address the challenge of modeling heterogeneity in health care. The first paper presents a decision-tree model to address clinicians’ need to decide among various liver cirrhosis diagnosis strategies. The second paper presents a micro-simulation model to assess the impact on cardiovascular disease (CVD) to help decision makers at government agencies develop cost-effective food policies to prevent cardiovascular diseases, a public-health domain application. The third paper compares a set of data-driven prediction models, the best performing of which is paired together with interpretable machine learning to facilitate the coordination of optimization for hospital-discharged patients choosing skilled nursing facilities. This collection of studies addresses important modeling challenges in specific healthcare domains, and also broadly contribute to research in medical decision-making, public health policy and healthcare systems.</p>

Bakgrund: Nya bestämmelser för klagomålshantering togs i bruk 2018 med syfte att stärka patienternas ställning och utveckla det systematiska arbetet med patientsäkerhet. En patient kan rapportera synpunkter och klagomål direkt till sin vårdgivare som är skyldig att ta emot ärendet och utreda vad som har hänt och vidta åtgärder. Forskning har visat att systematik saknas i hur verksamheter tar tillvara innehållet i ärenden som tas emot och det saknas en gemensam kategorisering. En process utvecklades inom Region Stockholm där patienter kan lämna synpunkter och klagomål via en e-tjänst på 1177 som sedan hanteras i regionens IT-stöd för avvikelsehantering. Syfte: Studiens syfte var att på aggregerad nivå undersöka inom vilka problemområden patienter rapporterar synpunkter och klagomål till vårdgivare inom akutsjukvård och primärvård via e-tjänsten samt om dessa ärenden kan bidra till lärande samt kvalitetsförbättring och ökad patientsäkerhet. Metod: Kvantitativ och kvalitativ forskningsansats det vill säga en blandad metod användes. Intervjuer genomfördes med vårdgivare och analyserades med en tematisk innehållsanalys utifrån en induktiv ansats. Problemområden kategoriserades om och jämfördes med Healthcare Complaints Analysis Tool (HCAT). Resultat: De flesta synpunkter och klagomål rapporterades inom problemområdet kommunikation med delproblemet bemötande. Det förelåg ingen markant skillnad i problemområden mellan akutsjukvård och primärvård. Intervjuer visade att vårdgivarna tog tillvara innehållet i synpunkter och klagomål på olika sätt för lärande och i sitt arbete med kvalitet och patientsäkerhet. HCAT-verktyget uppvisade ett överensstämmande resultat vid kategorisering av de tre största problemområdena av klagomål. Slutsats: Genom att systematiskt hantera synpunkter och klagomål på aggregerad nivå kan vårdgivarna få underlag till att bedriva ett ändamålsenligt arbete med kvalitet och patientsäkerhet. Användande av gemensamma kategoriseringar är en förutsättning för regionala och nationella jämförelser. / Background: New regulations for handling complaints were introduced in 2018 with the aim of strengthening the position of patients and developing the systematic work with patient safety. A patient can report complaints directly to their healthcare provider who is required to receive the case and investigate what has happened and act. Research has shown that there is a lack of systematicity in how caregivers make use of the content of cases that are received and there is a lack of common categorization. A process was developed within Region Stockholm where patients can submit complaints via an e-service, which is then handled in the region's IT -system for deviation management. Aim: The aim of the study was to investigate on an aggregated level in which problem areas patients report complaints to care providers in emergency care and primary care via the e-service and in if they can contribute to learning, quality improvement and increased patient safety. Method: A mixed methods approach has been used. Interviews were conducted with caregivers and analyzed with a thematic content analysis based on an inductive approach. Problem areas were recategorized and compared using the Healthcare Complaints Analysis Tool (HCAT). Results: Complaints reported to the caregivers were most common in communication and personal treatment. There was no difference in problem areas between emergency care and primary care. Interviews showed that the caregivers used the content of complaints in different ways for learning and in their work with quality and patient safety. The HCAT-tool showed consistent results in categorizing the top three problem areas of complaints. Conclusion: By the systematically handling of complaints on an aggregated level, the care providers can obtain a basis for carrying out an appropriate work with quality and patient safety. Use of collective categorizations is a prerequisite for regional and national comparisons.

Spinal cord injury, whether traumatic or nontraumatic, can partially or completely damage sensorimotor pathways between the brain and the body, leading to heterogeneous gait abnormalities. Mobility impairments also depend on other factors such as age, weight, time since injury, pain, and walking aids used. The ASIA Impairment Scale is recommended to classify injury severity, but is not designed to characterize individual ambulatory capacity. Other standardized tests based on subjective or timing/distance assessments also have only limited ability to determine an individual's capacity. Data-driven techniques have demonstrated effectiveness in analysing complexity in many domains and may provide additional perspectives on the complexity of gait performance in persons with spinal cord injury. The studies in this thesis aimed to address the complexity of gait and functional abilities after spinal cord injury using data-driven approaches. The aim of the first manuscript was to characterize the heterogeneous gait patterns in persons with incomplete spinal cord injury. Dissimilarities among gait patterns in the study population were quantified with multivariate dynamic time warping. Gait patterns were classified into six distinct clusters using hierarchical agglomerative clustering. Through random forest classifiers with explainable AI, peak ankle plantarflexion during swing was identified as the feature that most often distinguished most clusters from the controls. By combining clinical evaluation with the proposed methods, it was possible to provide comprehensive analyses of the six gait clusters.     The aim of the second manuscript was to quantify sensorimotor effects on walking performance in persons with spinal cord injury. The relationships between 11 input features and 2 walking outcome measures - distance walked in 6 minutes and net energy cost of transport - were captured using 2 Gaussian process regression models. Explainable AI revealed the importance of muscle strength on both outcome measures. Use of walking aids also influenced distance walked, and  cardiovascular capacity influenced energy cost. Analyses for each person also gave useful insights into individual performance.     The findings from these studies demonstrate the large potential of advanced machine learning and explainable AI to address the complexity of gait function in persons with spinal cord injury. / Skador på ryggmärgen, oavsett om de är traumatiska eller icke-traumatiska, kan helt eller delvis skada sensoriska och motoriska banor mellan hjärnan och kroppen, vilket påverkar gången i varierande grad. Rörelsenedsättningen beror också på andra faktorer såsom ålder, vikt, tid sedan skadan uppstod, smärta och gånghjälpmedel. ASIA-skalan används för att klassificera ryggmärgsskadans svårighetsgrad, men är inte utformad för att karaktärisera individens gångförmåga. Andra standardiserade tester baserade på subjektiva eller tids och avståndsbedömningar har också begränsad möjlighet att beskriva individuell kapacitet. Datadrivna metoder är kraftfulla och kan ge ytterligare perspektiv på gångens komplexitet och prestation. Studierna i denna avhandling syftar till att analysera komplexa relationer mellan gång, motoriska samt sensoriska funktion efter ryggmärgsskada med hjälp av datadrivna metoder. Syftet med den första studien är att karaktärisera de heterogena gångmönster hos personer med inkomplett ryggmärgsskada. Multivariat dynamisk tidsförvrägning (eng: Multivariate dynamic time warping) användes för att kvantifiera gångskillnader i studiepopulationen. Hierarkisk agglomerativ klusteranalys (eng: hierarchical agglomerative clustering) delade upp gång i sex distinkta kluster, varav fyra hade lägre hastighet än kontroller. Med hjälp av förklarbara AI (eng: explainable AI) identifierades det att fotledsvinkeln i svingfasen hade störst påverkan om vilken kluster som gångmönstret hamnat i. Genom att kombinera klinisk undersökning med datadrivna metoder kunde vi beskriva en omfattande bild av de sex gångklustren. Syftet med den andra manuskriptet är att kvantifiera sensoriska och motoriska faktorerans påverkan på gångförmåga efter ryggmärgsskada. Med hjälp av två Gaussian process-regressionsmodeller identiferades sambanden mellan 11 beskrivande faktorer och 2 gång prestationsmått, nämligen gångavstånd på 6 minuter samt metabola energiåtgång. Med hjälp av förklarbar AI påvisades det stora påverkan av muskelstyrka på både gångsträckan och energiåtgång. Gånghjälpmedlet samt kardiovaskulär kapaciteten hade också betydande påverkan på gångprestation. Enskilda analyser gav insiktsfull information om varje individ. Resultaten från dessa studier visar på potentiella tillämpningar av avancerad maskininlärning och AI metoder för att analysera komplexa relationer mellan funktion och motorisk prestation efter ryggmärgsskada. / <p>QC 20240221</p>

This study investigates, within the current health care situation, the interrelationship of the user, resources and tool in the design of a prototype WELLNESS database-driven web site. A shift has taken place in health care, in which the base of conventional medicine has broadened to integrate other systems, practices and worldviews. These include complementary and alternative medicine, health promotion, disease prevention and wellness. Emphasis is placed on the need to take personal responsibility for one's own health and wellness. The global burden of chronic disease, reaching epidemic proportions, is increasingly linked to risk factors resulting from personal lifestyle choices. The growing evidence of the user's need to make personal, informed, lifestyle choices and their reliance on the Web for health information, required investigation. WELLNESS, a specific orientation to health and wellness, formed the framework within which the user and resources were defined and the tool designed. The user was profiled as the WELLNESS health information seeker, hereby contributing significantly to an understanding of the user in this new context. The user profile informed the establishment of resource selection criteria and tool design. The identification of WELLNESS content selection criteria, within a five-dimensional model, was required to ensure quality, relevant and credible resources. The tool is comprised of the WELLNESS thesaurus and WELLNESS database-driven web site. The WELLNESS thesaurus was constructed based on a combination of relevant thesauri. It will be used as an indexing tool. An investigation of existing health information web sites highlighted the importance of designing a specific WELLNESS database-driven web site. A database host was identified against which the original study's conceptual schema was assessed. A low-fidelity prototype web site was designed as the interface between the WELLNESS health information seeker and the database of WELLNESS health information resources. This study has epidemiological, philosophical, epistemological, sociological and psychological relevance. The provision of access to WELLNESS health information resources, made available in the WELLNESS database-driven web site, for personal, informed lifestyle choice by the WELLNESS health information seeker could potentially contribute to the reduction of the global burden of chronic disease. / Information Science / D.Litt. et Phil. (Information Science)