An ICT-based closed-loop model to improve care for heart failure patients

Durante las últimas décadas se ha producido un fenómeno global de envejecimiento en la población. Esta tendencia se puede observar prácticamente en todos los países del mundo y se debe principalmente a los avances en la medicina, y a los descensos en las tasas de fertilidad y mortalidad. El envejecimiento de la población tiene un gran impacto en la salud de los ciudadanos, y a menudo es la causa de aparición de enfermedades crónicas. Este tipo de enfermedades supone una amenaza y una carga importantes para la sociedad, especialmente en aspectos como la mortalidad o los gastos en los sistemas sanitarios. Entre las enfermedades cardiovasculares, la insuficiencia cardíaca es probablemente la condición con mayor prevalencia y afecta a 23-26 millones de personas en todo el mundo. Normalmente, la insuficiencia cardíaca presenta un mal pronóstico y una tasa de supervivencia bajas, en algunos casos peores que algún tipo de cáncer. Además, suele ser la causa de hospitalizaciones frecuentes y es una de las enfermedades más costosas para los sistemas sanitarios. La tendencia al envejecimiento de la población y la creciente incidencia de las enfermedades crónicas están llevando a una situación en la que los sistemas de salud no son capaces de hacer frente a la demanda de la sociedad. Los servicios de salud existentes tendrán que adaptarse para ser efectivos y sostenibles en el futuro. Es necesario identificar nuevos paradigmas de cuidado de pacientes, así como mecanismos para la provisión de servicios que ayuden a transformar estos sistemas sanitarios. En este contexto, esta tesis se plantea la búsqueda de soluciones, basadas en las Tecnologías de la Información y la Comunicación (TIC), que contribuyan a realizar la transformación en los sistemas sanitarios. En concreto, la tesis se centra en abordar los problemas de una de las enfermedades con mayor impacto en estos sistemas: la insuficiencia cardíaca. Las siguientes hipótesis constituyen la base para la realización de este trabajo de investigación: 1. Es posible definir un modelo basado en el paradigma de lazo cerrado y herramientas TIC que formalice el diseño de mejores servicios para pacientes con insuficiencia cardíaca. 2. El modelo de lazo cerrado definido se puede utilizar para definir un servicio real que ayude a gestionar la insuficiencia cardíaca crónica. 3. La introducción, la adopción y el uso de un servicio basado en el modelo definido se traducirá en mejoras en el estado de salud de los pacientes que sufren insuficiencia cardíaca. a. La utilización de un sistema basado en el modelo de lazo cerrado definido mejorará la experiencia del usuario de los pacientes. La definición del modelo planteado se ha basado en el estándar ISO / EN 13940- Sistema de conceptos para dar soporte a la continuidad de la asistencia. Comprende un conjunto de conceptos, procesos, flujos de trabajo, y servicios como componentes principales, y representa una formalización de los servicios para los pacientes con insuficiencia cardíaca. Para evaluar el modelo definido se ha definido un servicio real basado en el mismo, además de la implementación de un sistema de apoyo a dicho servicio. El diseño e implementación de dicho sistema se realizó siguiendo la metodología de Diseño Orientado a Objetivos. El objetivo de la evaluación consistía en investigar el efecto que tiene un servicio basado en el modelo de lazo cerrado sobre el estado de salud de los pacientes con insuficiencia cardíaca. La evaluación se realizó en el marco de un estudio clínico observacional. El análisis de los resultados ha comprendido métodos de análisis cuantitativos y cualitativos. El análisis cuantitativo se ha centrado en determinar el estado de salud de los pacientes en base a datos objetivos (obtenidos en pruebas de laboratorio o exámenes médicos). Para realizar este análisis se definieron dos índices específicos: el índice de estabilidad y el índice de la evolución del estado de salud. El análisis cualitativo ha evaluado la autopercepción del estado de salud de los pacientes en términos de calidad de vida, auto-cuidado, el conocimiento, la ansiedad y la depresión, así como niveles de conocimiento. Se ha basado en los datos recogidos mediante varios cuestionarios o instrumentos estándar (i.e. EQ-5D, la Escala de Ansiedad y Depresión (HADS), el Cuestionario de Cardiomiopatía de Kansas City (KCCQ), la Escala Holandesa de Conocimiento de Insuficiencia Cardíaca (DHFKS), y la Escala Europea de Autocuidado en Insuficiencia Cardíaca (EHFScBS), así como cuestionarios dedicados no estandarizados de experiencia de usuario. Los resultados obtenidos en ambos análisis, cuantitativo y cualitativo, se compararon con el fin de evaluar la correlación entre el estado de salud objetivo y subjetivo de los pacientes. Los resultados de la validación demostraron que el modelo propuesto tiene efectos positivos en el cuidado de los pacientes con insuficiencia cardíaca y contribuye a mejorar su estado de salud. Asimismo, ratificaron al modelo como instrumento válido para la definición de servicios mejorados para la gestión de esta enfermedad. ABSTRACT During the last decades we have witnessed a global aging phenomenon in the population. This can be observed in practically every country in the world, and it is mainly caused by the advances in medicine, and the decrease of mortality and fertility rates. Population aging has an important impact on citizens’ health and it is often the cause for chronic diseases, which constitute global burden and threat to the society in terms of mortality and healthcare expenditure. Among chronic diseases, Chronic Heart Failure (CHF) or Heart Failure (HF) is probably the one with highest prevalence, affecting between 23 and 26 million people worldwide. Heart failure is a chronic, long-term and serious condition with very poor prognosis and worse survival rates than some type of cancers. Additionally, it is often the cause of frequent hospitalizations and one of the most expensive conditions for the healthcare systems. The aging trends in the population and the increasing incidence of chronic diseases are leading to a situation where healthcare systems are not able to cope with the society demand. Current healthcare services will have to be adapted and redefined in order to be effective and sustainable in the future. There is a need to find new paradigms for patients’ care, and to identify new mechanisms for services’ provision that help to transform the healthcare systems. In this context, this thesis aims to explore new solutions, based on ICT, that contribute to achieve the needed transformation within the healthcare systems. In particular, it focuses on addressing the problems of one of the diseases with higher impact within these systems: Heart Failure. The following hypotheses represent the basis to the elaboration of this research: 1. It is possible to define a model based on a closed-loop paradigm and ICT tools that formalises the design of enhanced healthcare services for chronic heart failure patients. 2. The described closed-loop model can be exemplified in a real service that supports the management of chronic heart failure disease. 3. The introduction, adoption and use of a service based on the outlined model will result in improvements in the health status of patients suffering heart failure. 4. The user experience of patients when utilizing a system based on the defined closed-loop model will be enhanced. The definition of the closed-loop model for health care support of heart failure patients have been based on the standard ISO/EN 13940 System of concepts to support continuity of care. It includes a set of concept, processes and workflows, and services as main components, and it represent a formalization of services for heart failure patients. In order to be validated, the proposed closed-loop model has been instantiated into a real service and a supporting IT system. The design and implementation of the system followed the user centred design methodology Goal Oriented Design. The validation, that included an observational clinical study, aimed to investigate the effect that a service based on the closed-loop model had on heart failure patients’ health status. The analysis of results comprised quantitative and qualitative analysis methods. The quantitative analysis was focused on determining the health status of patients based on objective data (obtained in lab tests or physical examinations). Two specific indexes where defined and considered in this analysis: the stability index and the health status evolution index. The qualitative analysis assessed the self-perception of patients’ health status in terms of quality of life, self-care, knowledge, anxiety and depression, as well as knowledge levels. It was based on the data gathered through several standard instruments (i.e. EQ-5D, the Hospital Anxiety and Depression Scale, the Kansas City Cardiomyopathy Questionnaire, the Dutch Heart Failure Knowledge Scale, and the European Heart Failure Self-care Behaviour Scale) as well as dedicated non-standardized user experience questionnaires. The results obtained in both analyses, quantitative and qualitative, were compared in order to assess the correlation between the objective and subjective health status of patients. The results of the validation showed that the proposed model contributed to improve the health status of the patients and had a positive effect on the patients’ care. It also proved that the model is a valid instrument for designing enhanced healthcare services for heart failure patients.

An authoring tool for decision support systems in context questions of ecological knowledge

Decision support systems (DSS) support business or organizational decision-making activities, which require the access to information that is internally stored in databases or data warehouses, and externally in the Web accessed by Information Retrieval (IR) or Question Answering (QA) systems. Graphical interfaces to query these sources of information ease to constrain dynamically query formulation based on user selections, but they present a lack of flexibility in query formulation, since the expressivity power is reduced to the user interface design. Natural language interfaces (NLI) are expected as the optimal solution. However, especially for non-expert users, a real natural communication is the most difficult to realize effectively. In this paper, we propose an NLI that improves the interaction between the user and the DSS by means of referencing previous questions or their answers (i.e. anaphora such as the pronoun reference in “What traits are affected by them?”), or by eliding parts of the question (i.e. ellipsis such as “And to glume colour?” after the question “Tell me the QTLs related to awn colour in wheat”). Moreover, in order to overcome one of the main problems of NLIs about the difficulty to adapt an NLI to a new domain, our proposal is based on ontologies that are obtained semi-automatically from a framework that allows the integration of internal and external, structured and unstructured information. Therefore, our proposal can interface with databases, data warehouses, QA and IR systems. Because of the high NL ambiguity of the resolution process, our proposal is presented as an authoring tool that helps the user to query efficiently in natural language. Finally, our proposal is tested on a DSS case scenario about Biotechnology and Agriculture, whose knowledge base is the CEREALAB database as internal structured data, and the Web (e.g. PubMed) as external unstructured information.

Designing mobile technologies for individuals with disabilities

While mobile devices offer many innovative possibilities to help increase the standard of living for individuals with disabilities and other special needs, the process of developing assistive technology, such that it will be effective across a group of individuals with a particular disability, can be extremely challenging. This chapter discusses key issues and trends related to designing and evaluating mobile assistive technology for individuals with disabilities. Following an overview of general design process issues, we argue (based on current research trends) that individuals with disabilities and domain experts be involved throughout the development process. While this, in itself, presents its own set of challenges, many strategies have successfully been used to overcome the difficulties and maximize the contributions of users and experts alike. Guidelines based on these strategies are discussed and are illustrated with real examples from one of our active research projects.

Did you see that?

The development of appropriate lab-based evaluation techniques for mobile technologies requires continued research attention. In particular, experimental design needs to account for the environmental context in which such technologies will ultimately be used. This requires, in part, that relevant environmental distractions be incorporated into evaluations. This chapter reflects on different techniques that were used in three separate lab-based mobile evaluation experiments to present visual distractions to participants and to measure the participants’ cognizance of the distractions during the course of mobile evaluations of technology. The different techniques met the different needs of the three studies with respect to the fidelity of the data captured, the impact of acknowledging distractions on the evaluation task, and the typical context of use for the technology being evaluated. The results of the studies showed that the introduction of visual distractions did have an impact on the experimental task and indicate that future work is required in this area.

Did you see that?

The development of appropriate lab-based evaluation techniques for mobile technologies requires continued research attention. In particular, experimental design needs to account for the environmental context in which such technologies will ultimately be used. This requires, in part, that relevant environmental distractions be incorporated into evaluations. This chapter reflects on different techniques that were used in three separate lab-based mobile evaluation experiments to present visual distractions to participants and to measure the participants’ cognizance of the distractions during the course of mobile evaluations of technology. The different techniques met the different needs of the three studies with respect to the fidelity of the data captured, the impact of acknowledging distractions on the evaluation task, and the typical context of use for the technology being evaluated. The results of the studies showed that the introduction of visual distractions did have an impact on the experimental task and indicate that future work is required in this area.

Designing mobile technologies for individuals with disabilities

While mobile devices offer many innovative possibilities to help increase the standard of living for individuals with disabilities and other special needs, the process of developing assistive technology, such that it will be effective across a group of individuals with a particular disability, can be extremely challenging. This chapter discusses key issues and trends related to designing and evaluating mobile assistive technology for individuals with disabilities. Following an overview of general design process issues, we argue (based on current research trends) that individuals with disabilities and domain experts be involved throughout the development process. While this, in itself, presents its own set of challenges, many strategies have successfully been used to overcome the difficulties and maximize the contributions of users and experts alike. Guidelines based on these strategies are discussed and are illustrated with real examples from one of our active research projects.

A paradigm shift:alternative interaction techniques for use with mobile & wearable devices

Desktop user interface design originates from the fact that users are stationary and can devote all of their visual resource to the application with which they are interacting. In contrast, users of mobile and wearable devices are typically in motion whilst using their device which means that they cannot devote all or any of their visual resource to interaction with the mobile application -- it must remain with the primary task, often for safety reasons. Additionally, such devices have limited screen real estate and traditional input and output capabilities are generally restricted. Consequently, if we are to develop effective applications for use on mobile or wearable technology, we must embrace a paradigm shift with respect to the interaction techniques we employ for communication with such devices.This paper discusses why it is necessary to embrace a paradigm shift in terms of interaction techniques for mobile technology and presents two novel multimodal interaction techniques which are effective alternatives to traditional, visual-centric interface designs on mobile devices as empirical examples of the potential to achieve this shift.

Visualisation of quality information for geospatial and remote sensing data:providing the GIS community with the decision support tools for geospatial dataset quality evaluation

The evaluation of geospatial data quality and trustworthiness presents a major challenge to geospatial data users when making a dataset selection decision. The research presented here therefore focused on defining and developing a GEO label – a decision support mechanism to assist data users in efficient and effective geospatial dataset selection on the basis of quality, trustworthiness and fitness for use. This thesis thus presents six phases of research and development conducted to: (a) identify the informational aspects upon which users rely when assessing geospatial dataset quality and trustworthiness; (2) elicit initial user views on the GEO label role in supporting dataset comparison and selection; (3) evaluate prototype label visualisations; (4) develop a Web service to support GEO label generation; (5) develop a prototype GEO label-based dataset discovery and intercomparison decision support tool; and (6) evaluate the prototype tool in a controlled human-subject study. The results of the studies revealed, and subsequently confirmed, eight geospatial data informational aspects that were considered important by users when evaluating geospatial dataset quality and trustworthiness, namely: producer information, producer comments, lineage information, compliance with standards, quantitative quality information, user feedback, expert reviews, and citations information. Following an iterative user-centred design (UCD) approach, it was established that the GEO label should visually summarise availability and allow interrogation of these key informational aspects. A Web service was developed to support generation of dynamic GEO label representations and integrated into a number of real-world GIS applications. The service was also utilised in the development of the GEO LINC tool – a GEO label-based dataset discovery and intercomparison decision support tool. The results of the final evaluation study indicated that (a) the GEO label effectively communicates the availability of dataset quality and trustworthiness information and (b) GEO LINC successfully facilitates ‘at a glance’ dataset intercomparison and fitness for purpose-based dataset selection.

Mobile Phones, Sensors & The Crowd: Lessons Learnt From Development of a Real-Time Travel Information System

Postprint

El papel de los museos en la sociedad actual: discurso institucional o museo participativo

Desde hace ya varias décadas se ha extendido un lema convertido en habitual año tras año: que los museos necesitan cambios y que, éstos, deben seguir produciéndose en el futuro para que estas instituciones sigan siendo significativas en la sociedad, es decir, para los ciudadanos a quienes representan y sirven. La cuestión de cómo afrontan los cambios es lo que verdaderamente ha dado lugar a reflexiones interesantes en el campo de la museología. No existe un enfoque único para una cuestión tan compleja, ya que está compuesta de múltiples capas que, en muchas ocasiones, son difícilmente acoplables. Sin embargo, en términos generales, podemos apuntar que va a ser en la exposición donde los nuevos planteamientos tendrán su desarrollo.

Knowledge Workers and Associative Activity: An Examination of Knowledge Work Systems and Settings

Thesis (Ph.D.)--University of Washington, 2016-08

Software and Space: Investigating How a Cosmology Research Group Enacts Infrastructure by Producing Software

Thesis (Ph.D.)--University of Washington, 2016-08

Exploring problem-framing through behavioural heuristics

Design for behaviour change aims to influence user behaviour, through design, for social or environmental benefit. Understanding and modelling human behaviour has thus come within the scope of designers’work, as in interaction design, service design and user experience design more generally. Diverse approaches to how to model users when seeking to influence behaviour can result in many possible strategies, but a major challenge for the field is matching appropriate design strategies to particular behaviours (Zachrisson & Boks, 2012). In this paper, we introduce and explore behavioural heuristics as a way of framing problem-solution pairs (Dorst & Cross, 2001) in terms of simple rules. These act as a ‘common language’ between insights from user research and design principles and techniques, and draw on ideas from human factors, behavioural economics, and decision research. We introduce the process via a case study on interaction with office heating systems, based on interviews with 16 people. This is followed by worked examples in the ‘other direction’, based on a workshop held at the Interaction ’12 conference, extracting heuristics from existing systems designed to influence user behaviour, to illustrate both ends of a possible design process using heuristics.

Käytettävyyssuunnittelun teoria ja käytäntö: Tapaustutkimus huonekalujen verkkokaupasta

Käytettävien ohjelmistojen suunnittelu tuo hyötyjä loppukäyttäjälle sekä muille sidosryhmille. Verkkokaupassa käytettävyys on elintärkeää, koska asiakkaat vaihtavat helposti seuraavalle sivustolle, mikäli he eivät löydä etsimäänsä. Tutkimusten mukaan käytettävyys vaikuttaa ostopäätöksen tekemiseen. Lisäksi käytettävyydellä on merkitystä asiakastyytyväisyyteen, joka taas vaikuttaa asiakasuskollisuuteen. Tässä tutkielmassa tutkittiin, miten käytettävyyttä suunnitellaan käytännössä verrattuna teoreettisiin suosituksiin. Tapaustutkimuksen kohteena oli huonekaluja myyvän kansainvälisen yrityksen verkkokaupan uudistamiseen tähtäävä projekti. Uudistamistarve nousi aikaisemman verkkokauppaversion puutteellisesta käytettävyydestä. Projekti toteutettiin ketterällä Scrum-menetelmällä. Empiirinen aineisto kerättiin puolistrukturoitujen haastattelujen avulla. Haastateltavat olivat käyttökokemuksen suunnitteluun osallistuvia henkilöitä. Haastattelujen teemat laadittiin teoreettisen aineiston pohjalta. Teoreettisessa osuudessa tutkittiin käytettävyyden suunnitteluun liittyviä periaatteita, prosessia ja menetelmiä. Aikaisemmasta tutkimuksesta löydettiin 12 periaatetta, jotka tukevat ja luonnehtivat käyttäjäkeskeistä suunnittelua. Käytettävyyttä suunnitellaan käyttäjäkeskeisen prosessin avulla. Eri prosessimallit pitivät keskeisinä asioina käyttökontekstin määrittelyä ja ymmärtämistä, mitattavia käytettävyysvaatimuksia, suunnitteluratkaisujen empiiristä arviointia sekä suunnitteluprosessin iteratiivisuutta. Lisäksi tarkasteltiin, mitä suunnittelumenetelmiä tutkijat ehdottavat käytettävyyden suunnitteluun ja mitä kyselytutkimusten perusteella todellisuudessa käytetään. Verkkokauppaprojektissa käytettävyyden suunnittelu erosi osittain teoreettisista suosituksista. Käyttökontekstitietoa ei ollut kaikilla projektiin osallistuvilla, eikä käytettävyysvaatimuksia ollut asetettu teorian tarkoittamalla tavalla. Yhtäläisyyksiäkin löytyi. Verkkokauppaprojektissa suunnitteluratkaisuja arvioitiin empiirisesti todellisten käyttäjien edustajien avulla. Suunnitteluprosessi oli iteratiivinen eli suunnitteluratkaisuja oltiin valmiita muuttamaan arvioinnin tuloksena. Tutkimuksen perusteella suositellaan, että verkkokauppaprojektissa parannettaisiin kommunikointia, koska käyttökontekstitieto ei saavuttanut kaikkia projektissa työskenteleviä. Teorian tulisi entisestään korostaa kommunikoinnin tärkeyttä. Tutkimuksen perusteella esitetään myös, että teoria ohjaisi paremmin vaatimusmäärittelyjen tekemiseen käytännössä. Avainsanat: Käytettävyys, käyttäjäkeskeinen suunnittelu, käytettävyyden periaatteet, käytettävyyden suunnittelumenetelmät, ketterä ohjelmistokehitys, tapaustutkimus

Usability and Security in Medication Administration Applications

The traditional process of filling the medicine trays and dispensing the medicines to the patients in the hospitals is manually done by reading the printed paper medicine chart. This process can be very strenuous and error-prone, given the number of sub-tasks involved in the entire workflow and the dynamic nature of the work environment. Therefore, efforts are being made to digitalise the medication dispensation process by introducing a mobile application called Smart Dosing application. The introduction of the Smart Dosing application into hospital workflow raises security concerns and calls for security requirement analysis. This thesis is written as a part of the smart medication management project at Embedded Systems Laboratory, A° bo Akademi University. The project aims at digitising the medicine dispensation process by integrating information from various health systems, and making them available through the Smart Dosing application. This application is intended to be used on a tablet computer which will be incorporated on the medicine tray. The smart medication management system include the medicine tray, the tablet device, and the medicine cups with the cup holders. Introducing the Smart Dosing application should not interfere with the existing process carried out by the nurses, and it should result in minimum modifications to the tray design and the workflow. The re-designing of the tray would include integrating the device running the application into the tray in a manner that the users find it convenient and make less errors while using it. The main objective of this thesis is to enhance the security of the hospital medicine dispensation process by ensuring the security of the Smart Dosing application at various levels. The methods used for writing this thesis was to analyse how the tray design, and the application user interface design can help prevent errors and what secure technology choices have to be made before starting the development of the next prototype of the Smart Dosing application. The thesis first understands the context of the use of the application, the end-users and their needs, and the errors made in everyday medication dispensation workflow by continuous discussions with the nursing researchers. The thesis then gains insight to the vulnerabilities, threats and risks of using mobile application in hospital medication dispensation process. The resulting list of security requirements was made by analysing the previously built prototype of the Smart Dosing application, continuous interactive discussions with the nursing researchers, and an exhaustive stateof- the-art study on security risks of using mobile applications in hospital context. The thesis also uses Octave Allegro method to make the readers understand the likelihood and impact of threats, and what steps should be taken to prevent or fix them. The security requirements obtained, as a result, are a starting point for the developers of the next iteration of the prototype for the Smart Dosing application.