In November 2012 Uppsala County Council (UCC) introduced an eHealth service, ‘My Health Record’, that gives all inhabitants over age 18 in Uppsala County access to their health records online. However, this service has not been evaluated before this study. We conducted an interview study, based on User Experience (UX) and Patient empowerment, with users of ‘My Health Record’ to get their opinions, and to see if and how the service can be improved. Our findings shows that the users are positive to the service and the aspects that can be improved mostly concern information and communication. Based on these results, we propose design principles as well as concrete design proposals which can be useful for re-designing the service as well as inspiration for similar projects. Additionally, an interesting finding is that the interviewees had very few opinions and complains on the actual interface, which could mean that the content (the health record) is so interesting that the interface becomes almost “invisible”. A conclusion we make is that UX and Patient empowerment is a good fit for each other, and that UX has advantages over traditional usability in services like this.

In recent years, many Personal Health Record (PHR) systems have been developed to retrieve patients&rsquo / Electonic Health Records (EHRs) from external sources. However, current PHRs can provide access to only a small number of EHR systems, since there are many dierent interfaces, data formats and medical terminologies among dierent systems. When this is the case, all these diversity yields high integration costs. Development of such systems is dicult and expensive because of the reasons such as accessing to evidence based medical information, utilization of social networks to share information, incorporation of available medical knowledge models, etc. Due to the technical diversity of external information systems, a developer of a PHR system faces a dicult integration process when he wants to integrate a new source or service. Integration of medical devices is also important and necessary in a PHR system. However, most of the medical device vendors use proprietary formats and protocols for communicating their devices with external systems / again, causing high integration eorts and costs. In this thesis, these problems and challenges are addressed by providing an on-line personal iv healthcare management platform, i.e. eSaglikKaydim which is built on top of a highly modular architecture and provides services based on worldwide standards. In this way, eSaglikKaydim platform can be integrated with any external health information service and medical device so that it maximizes the data variety retrieved from all kinds of external health data sources. The work presented in this thesis is part of the OSAmI project supported by European ITEA and funded by the TU&uml / BI

Distributional semantics allows models of linguistic meaning to be derived from observations of language use in large amounts of text. By modeling the meaning of words in semantic (vector) space on the basis of co-occurrence information, distributional semantics permits a quantitative interpretation of (relative) word meaning in an unsupervised setting, i.e., human annotations are not required. The ability to obtain inexpensive word representations in this manner helps to alleviate the bottleneck of fully supervised approaches to natural language processing, especially since models of distributional semantics are data-driven and hence agnostic to both language and domain. All that is required to obtain distributed word representations is a sizeable corpus; however, the composition of the semantic space is not only affected by the underlying data but also by certain model hyperparameters. While these can be optimized for a specific downstream task, there are currently limitations to the extent the many aspects of semantics can be captured in a single model. This dissertation investigates the possibility of capturing multiple aspects of lexical semantics by adopting the ensemble methodology within a distributional semantic framework to create ensembles of semantic spaces. To that end, various strategies for creating the constituent semantic spaces, as well as for combining them, are explored in a number of studies. The notion of semantic space ensembles is generalizable across languages and domains; however, the use of unsupervised methods is particularly valuable in low-resource settings, in particular when annotated corpora are scarce, as in the domain of Swedish healthcare. The semantic space ensembles are here empirically evaluated for tasks that have promising applications in healthcare. It is shown that semantic space ensembles – created by exploiting various corpora and data types, as well as by adjusting model hyperparameters such as the size of the context window and the strategy for handling word order within the context window – are able to outperform the use of any single constituent model on a range of tasks. The semantic space ensembles are used both directly for k-nearest neighbors retrieval and for semi-supervised machine learning. Applying semantic space ensembles to important medical problems facilitates the secondary use of healthcare data, which, despite its abundance and transformative potential, is grossly underutilized. / <p>At the time of the doctoral defense, the following papers were unpublished and had a status as follows: Paper 4 and 5: Unpublished conference papers.</p> / High-Performance Data Mining for Drug Effect Detection

Racial/ethnic disparities in cancer care are well documented in the research literature; however, less is known about the extent and potential source of cancer care disparities in the Veterans Health Administration (VA). In my first paper, I use logistic regression and hospital fixed effects models to examine racial disparities in 20 cancer-related quality measures and the extent to which racial differences in site of care explain VA cancer care disparities. I found evidence of racial disparities in 7 out of 20 cancer-related quality measures. In general, these disparities were primarily driven by racial differences in care for black and white patients within the same VA hospital, rather than racial differences in site of care.

Background: UK primary care accounts for 90% of patient contacts in the NHS, and over 300 million consultations every year. Consequently, when primary is suboptimal it has important impacts on population health. At the same time, virtually all general practices use electronic health records (EHR) to capture patient data. Clinical Decision Support (CDS) systems use it to highlight when individual patients do not receive care consistent with clinical guidelines, though ignore the wider population. Electronic Audit and Feedback (e-A&F) systems address the wider population, but their results are difficult to interpret. EHR data has the richness to suggest ways in which care quality could be improved, though this is currently not exploited. The aim of this thesis was to make progress towards better use of primary care EHR data for the purposes of quality improvement (QI) by focusing on e-A&F as a vehicle. Research Objectives were: 1) Develop a model and recommendations to guide EHR data analysis and its communication to health professionals; 2) Use these models and recommendations to develop a system for UK primary care; 3) Implement and evaluate the system to test the models and recommendations, and derive generalisable knowledge. Methods: The overall approach of this thesis was informed by guidance from the Medical Research Council on the development of complex interventions, and Boyrcki et al.’s evidence-based framework for the development of health information technologies (Chapter 2). Theory was first identified through a critical examination of the empirical and theoretical literature regarding CDS and e-A&F systems (Chapter 3), then built upon in a systematic literature search and metasynthesis of qualitative studies of A&F (and e-A&F) interventions (Chapter 4). This resulted in the development a new theory of A&F (Clinical Performance Feedback Intervention Theory; CP-FIT), which was used to inform the development of an e-A&F system for UK primary care – the Performance Improvement plaN GeneratoR (PINGR; version 1). PINGR was then iteratively optimised through a series of three empirical studies. First, its usability was evaluated by software experts using Heuristic Evaluation and Cognitive Walkthrough methodologies (Chapter 5). GPs then performed structured tasks using the system in a laboratory whilst their on-screen interactions and eye movements were recorded (Chapter 6). Finally, PINGR was implemented in 15 GP practices, and CP-FIT used to guide the mixed methods evaluation including examinations of usage records, and interviews with 38 health professionals. Results: There are both empirical and theoretical arguments for combining features from CDS and e-A&F systems to increase their effectiveness; a key recommendation is that e-A&F systems should suggest clinical actions to health professionals (Chapter 3). This is supported by CP-FIT, which has three core propositions: 1) A&F interventions exert their effects through health professionals taking action; 2) Health care organisations have limited capacity to engage with A&F; and 3) Health care professionals and organisations have a strong set of beliefs and behaviours regarding how they provide patient care (Chapter 4). Based on these findings, the unique feature of PINGR is that it suggests improvement actions to users based on EHR data analysis (‘decision-supported feedback’). Key findings from PINGR’s usability evaluation with software experts translated into a set of design guidelines for e-A&F interfaces regarding: summarising clinical performance, patient lists, patient-level information, and suggested actions (Chapter 5). When tested with GPs, these guidelines were found to impact: user engagement; actionability; and information prioritisation (Chapter 6). Following its implementation in practice, PINGR was used on 227 occasions to facilitate the care of 725 patients. These patients were 1.8 (95% CI 1.6-1.9) times more likely to receive improved care according to at least one clinical guideline. Barriers and facilitators to its success included: the resources available to use it; its perceived relative advantages; how compatible it was with pre-existing beliefs and ways of working; the credibility of its data; the complexity of the clinical problems it highlighted; and the ability to act on its recommendations (Chapter 7). Conclusion: It is both feasible and acceptable to health professionals to make better use of EHR data for QI by enabling e-A&F systems to suggest actions for them to take. When designing e-A&F interfaces, attention should be paid to how they summarise clinical performance, and present patient lists and detailed patient-level information. Implementation of e-A&F interventions is influenced by availability of resources, compatibility with existing workflows, and ability to take action based on their feedback results. Unresolved tensions exist regarding how they may deal with patient complexity. Policymakers should consider the relevance of these findings for National Clinical Audits and pay-for-performance initiatives.

Engaging youth with Type 1 diabetes (T1D) in the self-management of daily tasks and decision- making provides opportunities for positive health outcomes. However, emerging adulthood and care transitions are associated with decreased clinic attendance and diabetes complications. The process of shared decision making (SDM) comprises four key elements – acknowledge, consider, decide, act - and is identified as an optimal approach to making self-management decisions, yet it has been difficult to implement in practice. Personal health record (PHR) technology is a promising approach for overcoming such barriers. Still, today PHRs have yet to root themselves into care and present an opportunity for improvement in SDM and engagement in self-management decision making. Using a sequential two-phased investigation, this dissertation describes how PHRs can be designed to enable SDM and integrated into clinical practice to engage youth with T1D in self-management decision making. Phase 1 proposed an integrated SDM–PHR (e-PHR) functional model justified by youth with T1D (n=7) and providers (n=15) via a user-centered design approach. Located within an interconnected EHR ecosystem, e-PHR integrates 23 PHR functionalities for the SDM process, whereby each SDM element was mapped to PHR functions with a moderate level of agreement between patients and providers (Cohen's kappa 0.60-0.74). The Phase 2 mixed methods, pre-implementation evaluation utilized an online measurement instrument and survey and individual interviews, underpinned by the Normalization Process Theory (NPT), to describe the four cognitive and behavioural processes (coherence, cognitive participation, collective action, reflexive monitoring) known to influence the success of complex socio-technical implementations. Youth with T1D (n=8), providers (n=11), and EHR/clinical leaders (n=8) in British Columbia participated. Reliability tests of NPT-based instrument negated the use of scores for the coherence and reflexive monitoring constructs. Qualitative results indicated that e-PHR made sense as explained by two themes for ‘Coherence’: game changing technology and sensibility of change. Participants strongly agreed (mean score=4.6/5) with ‘Cognitive Participation’ processes requiring an investment in commitment, explained by two themes: sharing ownership of the work and enabling involvement. Weak agreement (mean score=3.6/5) was observed with ‘Collective Action’ processes requiring an investment in effort, explained by one theme, uncovering the challenge of building collective action, and 3 sub-themes, assessing fit, adapting to change together, and investing in the change. Participants appraised e-PHR as explained by two themes for ‘Reflexive Monitoring’: reflecting on value, and monitoring and adapting. Finally, participants strongly agreed (mean score=4.5/5) that e-PHR would positively affect engagement in self-management decision making in two themes: care is efficient and care is person-centred. The establishment of a e-PHR functional model is a precursor to system design requirements. Using the NPT framework, findings from the process evaluation indicated participants invest in sense-making, commitment and appraisal work of this technology. However, successful integration of e-PHR into clinical practice to positively affect engagement in self-management decision making will only be attained when systemic effort is invested to enact it. Further research is needed to explore this gap to inform priorities and approaches for future implementation success. / Graduate

Submitted by Maria Suzana Diniz (msuzanad@hotmail.com) on 2015-11-13T13:37:00Z No. of bitstreams: 1 arquivototal.pdf: 3391275 bytes, checksum: 21fa5584131c69274496290dee7e6d52 (MD5) / Made available in DSpace on 2015-11-13T13:37:00Z (GMT). No. of bitstreams: 1 arquivototal.pdf: 3391275 bytes, checksum: 21fa5584131c69274496290dee7e6d52 (MD5) Previous issue date: 2015-02-20 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES / Introduction: it is undeniable that the evolution of mobile computing devices, associated with the development of capacities for operation in wireless network, potencializes new ways to use them for nursing care provision, enabling to extend information systems up with the patient. Objectives: to developing an application for mobile device that allows data logging for systematization of nursing care in the Neonatal Intensive Care Unit (NICU) and implementing the prototype allowing to identify the nurses' perception about their use. Method: this is a methodological research of applied type, developed in the NICU of the Lauro Wanderley University Hospital, located in the city of João Pessoa, PB. The main technologies used for the development of software were the Ruby programming language, Ruby on Rails and JavaScript; Bootstrap framework; Ubuntu Linux production server, Nginx Webserver and PostgreSQL Database Management System. The software was developed in the period from May to September 2014 and used by nurses for thirty days, from 9th September to 9th October 2014. The study included five nurses who develop their activities in the NICU. To evaluating the application there was developed a semi-structured questionnaire and the results analyzed through the content thematic analysis of the method Bardin. There were obeyed guidelines inherent in the research protocol contained in Resolution No. 466/12, National Health Council (CNS). The project was approved and registered with the National Information System on Ethics in Research involving Human Subjects, with CAAE-25890914.5.0000.5183. Results: with respect to mobile technology used, in general, nurses do not present difficulties, because they have familiarity with this type of device. Those who experienced difficulties with the frequent use of the system, the obstacles were minimized. Overall, it is emphasized that the application includes features for SAE in NICU, but changes are suggested as the interface of screens and some terms of data collection and parameters available by the applicable. In the view of the study participants, the main contributions of software for mobile technology are: agility to develop and document the SAE, freedom of movement, evaluation of standardization of the newborn, time optimization in carrying out bureaucratic activities, ability to retrieve information and reducing the physical space occupied. Conclusion: therefore, a system for SAE in mobile technology allows flexibility in carrying out registration activities by the nurse, since the data collection can be performed at the bedside; in addition, offers numerous advantages to this professional work routine. / Introdução: É inegável que a evolução dos dispositivos de computação móvel, associada ao desenvolvimento das capacidades para operar em rede sem fios, potencializa novas formas de utilizá-los na prestação dos cuidados de enfermagem e estende os sistemas de informação até o paciente. Objetivos: Desenvolver um aplicativo para dispositivo móvel que possibilite o registro de dados para a Sistematização da Assistência de Enfermagem em Unidade de Terapia Intensiva Neonatal (UTIN) e implementar o protótipo para identificar a percepção dos enfermeiros quanto ao seu uso. Método: Trata-se de uma pesquisa metodológica do tipo aplicada, desenvolvida na UTIN do Hospital Universitário Lauro Wanderley, localizado no município de João Pessoa-PB. As principais tecnologias utilizadas para o desenvolvimento do software foram: a linguagem de programação Ruby, Ruby on Rails e JavaScript; o framework Bootstrap; o servidor de produção Ubuntu Linux, Nginx Webserver e o Sistema de Gerenciamento de Banco de Dados PostgreSQL. O software foi desenvolvido no período de maio a setembro de 2014 e utilizado pelas enfermeiras durante trinta dias - de 09 de setembro a 09 de outubro de 2014. Participaram do estudo cinco enfermeiras que desenvolvem suas atividades na UTI Neonatal. Para avaliar o aplicativo, foi elaborado um questionário semiestruturado, e os resultados, analisados através do método de análise temática de conteúdo de Bardin. A pesquisa obedeceu às orientações inerentes ao protocolo de pesquisa contido na Resolução nº 466/12 CNS. O projeto foi aprovado e registrado no Sistema Nacional de Informação sobre Ética em Pesquisa envolvendo Seres Humanos com CAAE-25890914.5.0000.5183. Resultados: No que se refere à tecnologia móvel utilizada, em geral, as enfermeiras não apresentaram dificuldades, pois se familiarizam com esse tipo de dispositivo. Quanto às que sentiram dificuldades, com o frequente uso do sistema, os obstáculos foram minimizados. De maneira geral, o aplicativo dispõe das funções necessárias para a SAE em UTI Neonatal, mas se sugerem alterações quanto à interface das telas e alguns termos da coleta de dados e parâmetros disponibilizados pelo aplicativo. Na opinião dos participantes do estudo, as principais contribuições do software para tecnologia móvel são: agilidade em desenvolver e documentar a SAE, liberdade de movimentação, padronização da avaliação do recém-nascido, otimização de tempo na realização de atividades burocráticas, possibilidade de resgatar informações e redução do espaço físico ocupado. Conclusão: Um sistema para SAE em tecnologia móvel possibilita a flexibilidade na realização das atividades de registro pelo enfermeiro, uma vez que a coleta de dados pode ser realizada à beira do leito. Além disso, proporciona inúmeras vantagens ao cotidiano de trabalho desse profissional.

As Information Communication Technologies (ICTs) are growing, there have been ceaseless efforts to develop a National Health Information Infrastructure (NHII). One of the challenges in constructing a NHII is concerned with the management of Electronic Health Records (EHRs). In particular, exchanging EHRs is an important factor in establishing interoperability within a NHII, and the reusability of the functionality for exchanging EHRs is one of major solutions to construct an NHII. In this study, we obtain several component models, and conduct empirical studies to validate the component models in terms of component reusability. Using HL7 CDA (Health Level 7 Clinical Document Architecture) as an EHR standard, we implemented three prototypes of the EHR Exchanger based on JavaBeans, the exogenous connectors and the mediator connector respectively. As shown in the experiment results, the reuse approach using a mediator connector leads to better component reusability in terms of external dependency, total coupling between objects (CBO), additional lines of codes (LOC), and performance. Thus, we believe that the reuse approach using a mediator connector yields many benefits in terms of component reusability for the EHR Exchanger implementation.

Les dossiers patients électroniques contiennent des informations importantes pour la santé publique. La majeure partie de ces informations est contenue dans des documents rédigés en langue naturelle. Bien que le texte texte soit pertinent pour décrire des concepts médicaux complexes, il est difficile d'utiliser cette source de données pour l'aide à la décision, la recherche clinique ou l'analyse statistique.Parmi toutes les informations cliniques intéressantes présentes dans ces dossiers, la chronologie médicale du patient est l'une des plus importantes. Être capable d'extraire automatiquement cette chronologie permettrait d'acquérir une meilleure connaissance de certains phénomènes cliniques tels que la progression des maladies et les effets à long-terme des médicaments. De plus, cela permettrait d'améliorer la qualité des systèmes de question--réponse et de prédiction de résultats cliniques. Par ailleurs, accéder aux chronologiesmédicales est nécessaire pour évaluer la qualité du parcours de soins en le comparant aux recommandations officielles et pour mettre en lumière les étapes de ce parcours auxquelles une attention particulière doit être portée.Dans notre thèse, nous nous concentrons sur la création de ces chronologies médicales en abordant deux questions connexes en traitement automatique des langues: l'extraction d'informations temporelles et la résolution de la coréférence dans des documents cliniques.Concernant l'extraction d'informations temporelles, nous présentons une approche générique pour l'extraction de relations temporelles basée sur des traits catégoriels. Cette approche peut être appliquée sur des documents écrits en anglais ou en français. Puis, nous décrivons une approche neuronale pour l'extraction d'informations temporelles qui inclut des traits catégoriels.La deuxième partie de notre thèse porte sur la résolution de la coréférence. Nous décrivons une approche neuronale pour la résolution de la coréférence dans les documents cliniques. Nous menons une étude empirique visant à mesurer l'effet de différents composants neuronaux, tels que les mécanismes d'attention ou les représentations au niveau des caractères, sur la performance de notre approche. / Important information for public health is contained within Electronic Health Records (EHRs). The vast majority of clinical data available in these records takes the form of narratives written in natural language. Although free text is convenient to describe complex medical concepts, it is difficult to use for medical decision support, clinical research or statistical analysis.Among all the clinical aspects that are of interest in these records, the patient timeline is one of the most important. Being able to retrieve clinical timelines would allow for a better understanding of some clinical phenomena such as disease progression and longitudinal effects of medications. It would also allow to improve medical question answering and clinical outcome prediction systems. Accessing the clinical timeline is needed to evaluate the quality of the healthcare pathway by comparing it to clinical guidelines, and to highlight the steps of the pathway where specific care should be provided.In this thesis, we focus on building such timelines by addressing two related natural language processing topics which are temporal information extraction and clinical event coreference resolution.Our main contributions include a generic feature-based approach for temporal relation extraction that can be applied to documents written in English and in French. We devise a neural based approach for temporal information extraction which includes categorical features.We present a neural entity-based approach for coreference resolution in clinical narratives. We perform an empirical study to evaluate how categorical features and neural network components such as attention mechanisms and token character-level representations influence the performance of our coreference resolution approach.

This thesis investigates expectations of and experiences with eHealth services that allow users access to their health information. Although eHealth services are endorsed by many politicians and patients, they are met with strong resistance by health care professionals. Lacking this support hinders the uptake of the full potential of the service, especially with relation to patient participation and empowerment. This research investigates the frames of reference that are constructed by stakeholders in relation to eHealth services, such as direct-to-consumer genetic testing and electronic health records. The results are based on empirical data gathered during an experiment with media informatics students in Germany, and from interviews with physicians in Uppsala, Sweden. The eHealth services in question were framed by the participants of the conducted studies as potentially harmful for its users. The negative expectations were based mainly on a generalized view of patients as not sufficiently knowledgable and hence unable to understand the health information provided by the service. The participants in the reported studies (physicians and students in their role as designers) felt a responsibility to prevent any potential harm for the users of the eHealth service. Due to the framing based on assumed negative consequences for a supposedly vulnerable user group, the participants preferred to advocate against access rather than for patient empowerment and participation. Accessing health information was associated as holding little value for the users. This research enhances the understanding of the elements underlying this skepticism and concern. It shows that a specific view of patients and/or prospective users of an eHealth system can result in incongruent technological frames and value attribution. In line with participatory and value-sensitive design approaches as well as the aim to increase technology acceptance, patients and health care professionals should not only be included in the design process but also engage in joint activities in order to enable reframing. / Avhandlingen undersöker förväntningar på och erfarenheter av e-hälsotjänster som ger användare tillgång till sin egen hälsoinformation. Även om e-hälsotjänster har fått stöd av många politiker och patienter har de mötts av starkt motstånd från sjukvårdspersonal. Utan deras stöd blir det svårt att realisera tjänstens fulla potential, särskilt när det gäller patientens delaktighet och egenmakt.Forskningen undersöker de referensramar som konstrueras av intressenter för att förstå e-hälsotjänster, till exempel genetisk testning direkt till konsument och elektroniska patientjournaler. Resultaten baseras dels på empiriska data som samlats in i ett experiment med studenter i Tyskland, dels på intervjuer med läkare i Uppsala.De undersökta e-hälsotjänsterna upplevdes (were framed) av studiernas deltagare som potentiellt skadliga för användarna. De negativa förväntningarna baserades huvudsakligen på en allmän syn på patienter som inte tillräckligt kunniga och därmed oförmögna att förstå tjänstens hälsoinformation. Deltagarna i de rapporterade studierna (läkare och studenter i rollen som formgivare) kände ansvar för att förhindra eventuella skador för e-hälsotjänstens användare. Beroende på de förväntat negativa följderna för de förmodat utsatta patientgrupperna föredrog undersökningens deltagare att ta ställning emot patienternas åtkomst snarare än att ta ställning för deras deltagande och ökade egenmakt. Att ha tillgång till hälsoinformation bedömdes vara av lågt värde för användarna.Forskningen ökar förståelsen av de element som ligger till grund för deltagarnas upplevda skepsis och oro. Den visar att en specifik bild av patienter och/eller framtida användare av ett e-hälsosystemet kan leda till inkongruenta tekniska referensramar och värdebedömningar. I linje med inriktningarna deltagande design och värdebaserade design samt målet att öka teknisk acceptans, bör patienter och hälso- och sjukvårdspersonal inte bara ingå i designprocessen, utan också delta i gemensamma aktiviteter för att möjliggöra omtolkningar av sina tekniska referens- ramar.