Shifting the focus: Addressing breast cancer disparities at the health care organization level

The purpose of this study was to understand the scope of breast cancer disparities within the Texas Medical Center. The goal was to increase the awareness of breast cancer disparities at the health care organization level, and to foster the development of organizational interventions to reduce breast cancer disparities. The study seeks to answer the following questions: 1. Are hospitals in the Texas Medical Center implementing interventions to reduce breast cancer disparities? 2. What are their interventions for reducing the effects of non clinical factors on breast cancer treatment disparities? 3. What are their measures for monitoring, continuously improving, and evaluating the success of their interventions? ^ This research project was designed as a mixed methods case study. Quantitative breast cancer data for the years 2000-2009 was obtained from the Texas Cancer Registry (TCR). Qualitative data collection and analysis was done by conducting a total of 20 semi-structured interviews of administrators, physicians and nurses at five hospitals (A, B, C, D and E) in the Texas Medical Center (TMC). For quantitative analysis, the study was limited to early stage breast cancer patients: local and regional. The dependent variable was receipt of standard treatment: Surgery (Yes/No), BCS vs Mastectomy, Chemotherapy (Yes/No) and Radiation after BCS (Yes/No). The main independent variable was race: non-Hispanic White (NHW) , non-Hispanic Black (NHB), and Hispanic. Other covariates included age at diagnosis, diagnosis date, percent poverty, grade, stage, and regional nodes. Multivariate logistic regression was used to test the adjusted association between receipt of standard care and race. Qualitative data was analyzed with the Atlas.ti7 software (ATLAS.ti GmbH, Berlin). ^ Though there were significant differences by race for all dependent variables when the data was analyzed as a single group of all hospitals; at the level of the individual hospitals the results were not consistent by race/ethnicity across all dependent variables for hospitals A, B, and E. There were no racial differences in adjusted analysis for receipt of chemotherapy for the individual hospitals of interest in this study. For hospitals C and D, no racial disparities in treatment was observed in adjusted multivariable analysis. All organizations in this study were aware of the body of research which shows that there are disparities in breast cancer outcomes for patient population groups. However, qualitative data analysis found that there were differences in interest among hospitals in addressing breast cancer disparities in their patient population groups. Some organizations were actively implementing directed measures to reduce the breast cancer disparity gap in outcomes for patients, and others were not. Despite the differences in levels of interest, quantitative data analysis showed that organizations in the Texas Medical Center were making progress in reducing the burden of breast cancer disparities in the patient populations being served.^

Adherence to HIV /AIDS therapies among low -literacy populations: The ALP project

Adherence to HIV/AIDS therapies has been an important health problem since the early 1980s when AZT was first prescribed as a therapy for HIV/AIDS. It became particularly important between 1995 and 1997 with the advent of protease inhibitors (Chesney, Ickovics, Hecht, Sikipa, & Rabkin J., 1999) and became even more significant as persons with HIV/AIDS began to develop resistance to medications. Low-literacy populations have poorer health (Brez & Taylor, 1997) and higher AIDS rates (Simon, Hu, Diaz, & Kerndt, 1995), than their higher literacy counterparts due to delayed treatment (Baker, Parker, Williams, Clark, & Nurss, 1997), shame of literacy skills (Parikh, 1996), and poor access to care (Williams, et al., 1995). Poorer health and higher AIDS rates can also be attributed to poor patient-provider relationships (Crespo-Fierro, 1997; Eldred, Wu, Chaisson, & Moore, 1998) to a poorer understanding of medical protocols (Murphy, 1997), and inadequate patient education (Ungvarski, 1997; Davis, Michielutte, Askov, Williams, & Weiss, 1998, Doak, Doak, & Root, 1996). ^ The ALP intervention was developed for HIV positive low-literacy populations of African American women in Houston, Texas. The intervention was based on a needs assessment, using the PRECEDE model, an innovative process referred to as Intervention Mapping, and validated using formative evaluation methods with 54 individuals. The needs assessment resulted in a list of behavioral, environmental, predisposing, enabling, and reinforcing determinants of adherence. The Intervention Mapping framework was used to refine these determinants and develop a list of objectives describing what must be learned or changed to for the target population to adhere to HIV/AIDS therapies. Methods and strategies, were developed using theoretical constructs from the Health Belief Model (Rosenstock, 1974) and Social Cognitive Theory (Bandura, 1986). These theories, empirical evidence, and information from the target population indicated that perceived susceptibility, perceived severity, outcome expectations, and self-efficacy were important and changeable determinants of adherence to HIV/AIDS therapies for this population. ^ These components were brought together in the form of a theory-based color cartoon book and 10-minute cassette tape. The book was developed for people with 2.9 years of U.S. education as measured with the Flesch-Kincaid Grade Level method and the script was recorded onto a cassette tape to make it suitable for populations with even lower-literacy skills. A formative evaluation was conducted to ensure that the content and structure were accurate, clear, realistic, readable, appropriate, and likely to be used as intended. ^

Saving Young Lives: Pathfinder International’s Youth-Friendly Postabortion Care Project

As many as 2.5 million adolescent women seek abortion each year, and nearly 70,000 women die from complications related to unsafe abortion, of which almost half are women under the age of 25. A further 5 million women suffer disability due to unsafe abortion yearly. In most developing countries, abortion is legally restricted or highly inaccessible, which leads young women to seek services from unskilled practitioners often leading to incomplete, septic abortions and massive bleeding, which can result in permanent injury, infertility, and death. Based on our deeply held belief that all people, including adolescents, have a right to sexual and reproductive health services and the importance of addressing adolescent needs within Postabortion Care (PAC) services, Pathfinder used private funds to initiate a Youth-Friendly Postabortion Care (YFPAC) program in eight sub-Saharan African countries. Implemented between June 2007 and May 2008, the YFPAC program offered an opportunity to apply the PAC Consortium’s Technical Guidance on Youth-Friendly PAC, generating promising approaches and lessons learned. The goal of the YFPAC initiative was to increase access to PAC services that are responsive to adolescent needs in sub-Saharan Africa. While outcomes varied according to the country, the overall outcomes included: Increased community support for services and activities that prevent unwanted pregnancy, decreased stigma around abortion, and awareness of the issue of unsafe abortion among adolescent women: 311 peer educators reached almost 17,487 youth and other community members; 171 stakeholders (e.g., religious and traditional leaders, health officials, and local government officials) were sensitized on YFPAC, resulting in a positive shift in communities’ attitudes toward youth in need of PAC services. 125 service providers were trained to deliver YFPAC services and three doctors in Ghana were provided with a technical update on YFPAC. YFPAC services are available in Angola, Ghana, Nigeria, Mozambique, Tanzania, Uganda, Ethiopia, and Kenya. Pathfinder introduced YFPAC services into 25 facilities (in 27 service delivery points), and provided more than 3,800 clients with YFPAC services throughout the eight countries. The number of adolescent PAC clients seen at the project facilities increased— 710 clients were seen in the first quarter, 1,144 were seen in the fourth. The number of adolescent PAC clients who adopt a contraceptive method to prevent future unintended pregnancies has increased. Statistics show an average postabortion contraceptive acceptance of 69%, with the highest acceptance being 83% and the lowest being 44%. Evidence-based approaches, tools, and lessons learned are being disseminated and used for scale-up or replication of YFPAC interventions.

Health care providers' opinions on abortion: a study for the implementation of the legal abortion public policy in the Province of Santa Fe, Argentina

Background: In Argentina, abortion has been decriminalized under certain circumstances since the enactment of the Penal Code in 1922. Nevertheless, access to abortion under this regulatory framework has been extremely limited in spite of some recent changes. This article reports the findings of the first phase of an operations research study conducted in the Province of Santa Fe, Argentina, regarding the implementation of the local legal and safe abortion access policy. Methods: The project combined research and training to generate a virtuous circle of knowledge production, decision-making, and the fostering of an informed healthcare policy. The project used a pre-post design of three phases: baseline, intervention, and evaluation. It was conducted in two public hospitals. An anonymous self-administered questionnaire (n = 157) and semi-structured interviews (n = 27) were applied to gather information about tacit knowledge about the regulatory framework; personal opinions regarding abortion and its decriminalization; opinions on the requirements needed to carry out legal abortions; and service’s responses to women in need of an abortion. Results: Firstly, a fairly high percentage of health care providers lack accurate information on current legal framework. This deficit goes side by side with a restrictive understanding of both health and rape indications. Secondly, while a great majority of health care providers support abortion under the circumstances consider in the Penal Code, most of them are reluctant towards unrestricted access to abortion. Thirdly, health care providers’ willingness to perform abortions is noticeably low given that only half of them are ready to perform an abortion when a woman’s life is at risk. Willingness is even lower for each of the other current legal indications. Conclusions: Findings suggest that there are important challenges for the implementation of a legal abortion policy. Results of the study call for specific strategies targeting health care providers in order to better inform about current legal abortion regulations and to sensitize them about abortion social determinants. The interpretation of the current legal framework needs to be broadened in order to reflect a comprehensive view of the health indication, and stereotypes regarding women’s sexuality and abortion decisions need to be dismantled.

Project development for older adults : Orientation's contribution

This paper systematizes the work developed during the first year of the initiation scholarship for the research project entitled 'Orientation within the new Active Aging Model: educational, work-related, personal and social choices (1)'. This project articulates the Active Aging Model and the Theoretical Operative Model in Orientation, in order to learn how new projects are developed by older adults who used to be part of the formal system of labor and by those who were out of it, and to design programmatic proposals for educational, work-related, personal and social Orientation choices for such population. The sample is made up by seventy people between 64 and 74 years of age, residing in La Plata. The first conclusions evidence the importance that older adults place on project development at this stage of their life cycle, giving special importance to educational, personal and social projects; as well as on the identification of economic factors, health state, family needs for care and social support, among other things, as conditioning the fulfillment of such projects. The differences found in terms of the labor system they used to belong to can be especially observed in the type of project developed.

Project development for older adults : Orientation's contribution

This paper systematizes the work developed during the first year of the initiation scholarship for the research project entitled 'Orientation within the new Active Aging Model: educational, work-related, personal and social choices (1)'. This project articulates the Active Aging Model and the Theoretical Operative Model in Orientation, in order to learn how new projects are developed by older adults who used to be part of the formal system of labor and by those who were out of it, and to design programmatic proposals for educational, work-related, personal and social Orientation choices for such population. The sample is made up by seventy people between 64 and 74 years of age, residing in La Plata. The first conclusions evidence the importance that older adults place on project development at this stage of their life cycle, giving special importance to educational, personal and social projects; as well as on the identification of economic factors, health state, family needs for care and social support, among other things, as conditioning the fulfillment of such projects. The differences found in terms of the labor system they used to belong to can be especially observed in the type of project developed.

Project development for older adults : Orientation's contribution

This paper systematizes the work developed during the first year of the initiation scholarship for the research project entitled 'Orientation within the new Active Aging Model: educational, work-related, personal and social choices (1)'. This project articulates the Active Aging Model and the Theoretical Operative Model in Orientation, in order to learn how new projects are developed by older adults who used to be part of the formal system of labor and by those who were out of it, and to design programmatic proposals for educational, work-related, personal and social Orientation choices for such population. The sample is made up by seventy people between 64 and 74 years of age, residing in La Plata. The first conclusions evidence the importance that older adults place on project development at this stage of their life cycle, giving special importance to educational, personal and social projects; as well as on the identification of economic factors, health state, family needs for care and social support, among other things, as conditioning the fulfillment of such projects. The differences found in terms of the labor system they used to belong to can be especially observed in the type of project developed.

Urban forest health survey on Roznik in Ljubljana in 2013 by two methods

Urban forest health was surveyed on Roznik in Ljubljana (46.05141 N, 14.47797 E) in 2013 by two methods: ICP Forests and UFMO. ICP Forests is most commonly used monitoring programme in Europe - the International Co-operative Programme on the Assessment and Monitoring of Air Pollution Effects on Forests, which is based on systematic grid. UFMO method - Urban Forests Management Oriented method was developed in the frame of EMoNFUr Project - Establishing a monitoring network to assess lowland forest and urban plantations in Lombardy and urban forest in Slovenia (LIFE10 ENV/IT/000399). UFMO is based on non-linear transects (GPS tracks). ICP forests monitoring plots were established in July 2013 in the urban forest Roznik in Ljubljana .The 32 plots are located on sampling grid 500 × 500 m. The grid was down-scaled from the National Forest Monitoring survey, which bases on national sample grid 4 × 4 km. With the ICP forests method the following parameters for each tree within the 15 plots were gathered according to the ICP forests manual for Visual assessment of crown condition and damaging agents: tree species, percentage of defoliation, affected part of the tree, specification of affected part, location in crown, symptom, symptom specification, causal agents / factors, age of damage, damage extent, and damage extent on the trunk. With the UFMO method, the following parameters for each tree that needed sylviculture measure (felling, pruning, sanitary felling, thinning, etc.) were recorded: tree species, breast diameter, causal agent / damaging factor, GPS waypoint and GPS track. For overall picture in the urban forest health problems, also other biotic and abiotic damaging factors that did not require management action were recorded.

A Mobile Feedback System for Integrated E-health Platforms to improve Self-Care and Compliance of Diabetes Mellitus Patients

Exploiting the full potential of telemedical systems means using platform based solutions: data are recovered from biomedical sensors, hospital information systems, care-givers, as well as patients themselves, and are processed and redistributed in an either centralized or, more probably, decentralized way. The integration of all these different devices, and interfaces, as well as the automated analysis and representation of all the pieces of information are current key challenges in telemedicine. Mobile phone technology has just begun to offer great opportunities of using this diverse information for guiding, warning, and educating patients, thus increasing their autonomy and adherence to their prescriptions. However, most of these existing mobile solutions are not based on platform systems and therefore represent limited, isolated applications. This article depicts how telemedical systems, based on integrated health data platforms, can maximize prescription adherence in chronic patients through mobile feedback. The application described here has been developed in an EU-funded R&D project called METABO, dedicated to patients with type 1 or type 2 Diabetes Mellitus

Health and safety in the construction : subject pending to be included in the curriculum of architecture in Spain

The art of construction is a risky activity that directly affects the life and physical integrity of persons. Since the approval of Law 31/1995, of November 8, Prevention of Occupational Risks was the first legislation that established the current basis in all sectors and then transposed into Spanish law Directive 92/57/CEE called Royal Decree 1627/1997 of October 24, on minimum safety and health dispositions in construction works, measures have been proposed to develop a mixed body of scientific literature composed of researchers and professionals in the field of occupational safety and health, but even today there is still no clear and firm proposal, showing a lack of awareness in the occupational risk prevention and, therefore, a consolidation of the culture of prevention in society. Therefore, the technicians, who make up the building process, can incur in very high responsibilities, such as: Author of the project, Coordinator of Safety and Health during the preparation of the project and during the execution of works, Site Management: Site Manager. This involves the immediate creation of a general training in prevention for all architects starting when still studying, as well as specific training, appropriate and complementary to all the architects that will be devoted to the specialty of occupational safety and health in construction works. That is, first, we must make the responsible bodies aware of the urgent need to integrate risk prevention in the curricula of architecture and later in the continuing education of the profession. It is necessary that our teaching must conform to the laws on safety and health, due to the fact that the law recognizes our academic degrees and professional qualifications to perform functions in that area

Nutrition and physical activity programs for obesity treatment (PRONAF study). methodological approach of the project

Este trabajo aborda la metodología seguida para llevar a cabo el proyecto de investigación PRONAF (Clinical Trials Gov.: number NCT01116856.) Background: At present, scientific consensus exists on the multifactorial etiopatogenia of obesity. Both professionals and researchers agree that treatment must also have a multifactorial approach, including diet, physical activity, pharmacology and/or surgical treatment. These two last ones should be reserved for those cases of morbid obesities or in case of failure of the previous ones. The aim of the PRONAF study is to determine what type of exercise combined with caloric restriction is the most appropriate to be included in overweigth and obesity intervention programs, and the aim of this paper is to describe the design and the evaluation methods used to carry out the PRONAF study. Methods/design: One-hundred nineteen overweight (46 males) and 120 obese (61 males) subjects aged 18–50 years were randomly assigned to a strength training group, an endurance training group, a combined strength + endurance training group or a diet and physical activity recommendations group. The intervention period was 22 weeks (in all cases 3 times/wk of training for 22 weeks and 2 weeks for pre and post evaluation). All subjects followed a hypocaloric diet (25-30% less energy intake than the daily energy expenditure estimated by accelerometry). 29–34% of the total energy intake came from fat, 14–20% from protein, and 50–55% from carbohydrates. The mayor outcome variables assesed were, biochemical and inflamatory markers, body composition, energy balance, physical fitness, nutritional habits, genetic profile and quality of life. 180 (75.3%) subjects finished the study, with a dropout rate of 24.7%. Dropout reasons included: personal reasons 17 (28.8%), low adherence to exercise 3 (5.1%), low adherence to diet 6 (10.2%), job change 6 (10.2%), and lost interest 27 (45.8%). Discussion: Feasibility of the study has been proven, with a low dropout rate which corresponds to the estimated sample size. Transfer of knowledge is foreseen as a spin-off, in order that overweight and obese subjects can benefit from the results. The aim is to transfer it to sports centres. Effectiveness on individual health-related parameter in order to determine the most effective training programme will be analysed in forthcoming publications.

Building sustainable capacity for health research in africa through cloud computing applications

Access to information and continuous education represent critical factors for physicians and researchers over the world. For African professionals, this situation is even more problematic due to the frequently difficult access to technological infrastructures and basic information. Both education and information technologies (e.g., including hardware, software or networking) are expensive and unaffordable for many African professionals. Thus, the use of e-learning and an open approach to information exchange and software use have been already proposed to improve medical informatics issues in Africa. In this context, the AFRICA BUILD project, supported by the European Commission, aims to develop a virtual platform to provide access to a wide range of biomedical informatics and learning resources to professionals and researchers in Africa. A consortium of four African and four European partners work together in this initiative. In this framework, we have developed a prototype of a cloud-computing infrastructure to demonstrate, as a proof of concept, the feasibility of this approach. We have conducted the experiment in two different locations in Africa: Burundi and Egypt. As shown in this paper, technologies such as cloud computing and the use of open source medical software for a large range of case present significant challenges and opportunities for developing countries, such as many in Africa.

A platform for the development of patient applications in the domain of personalized health

Personalized health (p-health) systems can contribute significantly to the sustainability of healthcare systems, though their feasibility is yet to be proven. One of the problems related to their development is the lack of well-established development tools for this domain. As the p-health paradigm is focused on patient self-management, big challenges arise around the design and implementation of patient systems. This paper presents a reference platform created for the development of these applications, and shows the advantages of its adoption in a complex project dealing with cardio-vascular diseases.

A model to develop a platform for personalised health applications

Antecedentes Europa vive una situación insostenible. Desde el 2008 se han reducido los recursos de los gobiernos a raíz de la crisis económica. El continente Europeo envejece con ritmo constante al punto que se prevé que en 2050 habrá sólo dos trabajadores por jubilado [54]. A esta situación se le añade el aumento de la incidencia de las enfermedades crónicas, relacionadas con el envejecimiento, cuyo coste puede alcanzar el 7% del PIB de un país [51]. Es necesario un cambio de paradigma. Una nueva manera de cuidar de la salud de las personas: sustentable, eficaz y preventiva más que curativa. Algunos estudios abogan por el cuidado personalizado de la salud (pHealth). En este modelo las prácticas médicas son adaptadas e individualizadas al paciente, desde la detección de los factores de riesgo hasta la personalización de los tratamientos basada en la respuesta del individuo [81]. El cuidado personalizado de la salud está asociado a menudo al uso de las tecnologías de la información y comunicación (TICs) que, con su desarrollo exponencial, ofrecen oportunidades interesantes para la mejora de la salud. El cambio de paradigma hacia el pHealth está lentamente ocurriendo, tanto en el ámbito de la investigación como en la industria, pero todavía no de manera significativa. Existen todavía muchas barreras relacionadas a la economía, a la política y la cultura. También existen barreras puramente tecnológicas, como la falta de sistemas de información interoperables [199]. A pesar de que los aspectos de interoperabilidad están evolucionando, todavía hace falta un diseño de referencia especialmente direccionado a la implementación y el despliegue en gran escala de sistemas basados en pHealth. La presente Tesis representa un intento de organizar la disciplina de la aplicación de las TICs al cuidado personalizado de la salud en un modelo de referencia, que permita la creación de plataformas de desarrollo de software para simplificar tareas comunes de desarrollo en este dominio. Preguntas de investigación RQ1 >Es posible definir un modelo, basado en técnicas de ingeniería del software, que represente el dominio del cuidado personalizado de la salud de una forma abstracta y representativa? RQ2 >Es posible construir una plataforma de desarrollo basada en este modelo? RQ3 >Esta plataforma ayuda a los desarrolladores a crear sistemas pHealth complejos e integrados? Métodos Para la descripción del modelo se adoptó el estándar ISO/IEC/IEEE 42010por ser lo suficientemente general y abstracto para el amplio enfoque de esta tesis [25]. El modelo está definido en varias partes: un modelo conceptual, expresado a través de mapas conceptuales que representan las partes interesadas (stakeholders), los artefactos y la información compartida; y escenarios y casos de uso para la descripción de sus funcionalidades. El modelo fue desarrollado de acuerdo a la información obtenida del análisis de la literatura, incluyendo 7 informes industriales y científicos, 9 estándares, 10 artículos en conferencias, 37 artículos en revistas, 25 páginas web y 5 libros. Basándose en el modelo se definieron los requisitos para la creación de la plataforma de desarrollo, enriquecidos por otros requisitos recolectados a través de una encuesta realizada a 11 ingenieros con experiencia en la rama. Para el desarrollo de la plataforma, se adoptó la metodología de integración continua [74] que permitió ejecutar tests automáticos en un servidor y también desplegar aplicaciones en una página web. En cuanto a la metodología utilizada para la validación se adoptó un marco para la formulación de teorías en la ingeniería del software [181]. Esto requiere el desarrollo de modelos y proposiciones que han de ser validados dentro de un ámbito de investigación definido, y que sirvan para guiar al investigador en la búsqueda de la evidencia necesaria para justificarla. La validación del modelo fue desarrollada mediante una encuesta online en tres rondas con un número creciente de invitados. El cuestionario fue enviado a 134 contactos y distribuido en algunos canales públicos como listas de correo y redes sociales. El objetivo era evaluar la legibilidad del modelo, su nivel de cobertura del dominio y su potencial utilidad en el diseño de sistemas derivados. El cuestionario incluía preguntas cuantitativas de tipo Likert y campos para recolección de comentarios. La plataforma de desarrollo fue validada en dos etapas. En la primera etapa se utilizó la plataforma en un experimento a pequeña escala, que consistió en una sesión de entrenamiento de 12 horas en la que 4 desarrolladores tuvieron que desarrollar algunos casos de uso y reunirse en un grupo focal para discutir su uso. La segunda etapa se realizó durante los tests de un proyecto en gran escala llamado HeartCycle [160]. En este proyecto un equipo de diseñadores y programadores desarrollaron tres aplicaciones en el campo de las enfermedades cardio-vasculares. Una de estas aplicaciones fue testeada en un ensayo clínico con pacientes reales. Al analizar el proyecto, el equipo de desarrollo se reunió en un grupo focal para identificar las ventajas y desventajas de la plataforma y su utilidad. Resultados Por lo que concierne el modelo que describe el dominio del pHealth, la parte conceptual incluye una descripción de los roles principales y las preocupaciones de los participantes, un modelo de los artefactos TIC que se usan comúnmente y un modelo para representar los datos típicos que son necesarios formalizar e intercambiar entre sistemas basados en pHealth. El modelo funcional incluye un conjunto de 18 escenarios, repartidos en: punto de vista de la persona asistida, punto de vista del cuidador, punto de vista del desarrollador, punto de vista de los proveedores de tecnologías y punto de vista de las autoridades; y un conjunto de 52 casos de uso repartidos en 6 categorías: actividades de la persona asistida, reacciones del sistema, actividades del cuidador, \engagement" del usuario, actividades del desarrollador y actividades de despliegue. Como resultado del cuestionario de validación del modelo, un total de 65 personas revisó el modelo proporcionando su nivel de acuerdo con las dimensiones evaluadas y un total de 248 comentarios sobre cómo mejorar el modelo. Los conocimientos de los participantes variaban desde la ingeniería del software (70%) hasta las especialidades médicas (15%), con declarado interés en eHealth (24%), mHealth (16%), Ambient Assisted Living (21%), medicina personalizada (5%), sistemas basados en pHealth (15%), informática médica (10%) e ingeniería biomédica (8%) con una media de 7.25_4.99 años de experiencia en estas áreas. Los resultados de la encuesta muestran que los expertos contactados consideran el modelo fácil de leer (media de 1.89_0.79 siendo 1 el valor más favorable y 5 el peor), suficientemente abstracto (1.99_0.88) y formal (2.13_0.77), con una cobertura suficiente del dominio (2.26_0.95), útil para describir el dominio (2.02_0.7) y para generar sistemas más específicos (2_0.75). Los expertos también reportan un interés parcial en utilizar el modelo en su trabajo (2.48_0.91). Gracias a sus comentarios, el modelo fue mejorado y enriquecido con conceptos que faltaban, aunque no se pudo demonstrar su mejora en las dimensiones evaluadas, dada la composición diferente de personas en las tres rondas de evaluación. Desde el modelo, se generó una plataforma de desarrollo llamada \pHealth Patient Platform (pHPP)". La plataforma desarrollada incluye librerías, herramientas de programación y desarrollo, un tutorial y una aplicación de ejemplo. Se definieron cuatro módulos principales de la arquitectura: el Data Collection Engine, que permite abstraer las fuentes de datos como sensores o servicios externos, mapeando los datos a bases de datos u ontologías, y permitiendo interacción basada en eventos; el GUI Engine, que abstrae la interfaz de usuario en un modelo de interacción basado en mensajes; y el Rule Engine, que proporciona a los desarrolladores un medio simple para programar la lógica de la aplicación en forma de reglas \if-then". Después de que la plataforma pHPP fue utilizada durante 5 años en el proyecto HeartCycle, 5 desarrolladores fueron reunidos en un grupo de discusión para analizar y evaluar la plataforma. De estas evaluaciones se concluye que la plataforma fue diseñada para encajar las necesidades de los ingenieros que trabajan en la rama, permitiendo la separación de problemas entre las distintas especialidades, y simplificando algunas tareas de desarrollo como el manejo de datos y la interacción asíncrona. A pesar de ello, se encontraron algunos defectos a causa de la inmadurez de algunas tecnologías empleadas, y la ausencia de algunas herramientas específicas para el dominio como el procesado de datos o algunos protocolos de comunicación relacionados con la salud. Dentro del proyecto HeartCycle la plataforma fue utilizada para el desarrollo de la aplicación \Guided Exercise", un sistema TIC para la rehabilitación de pacientes que han sufrido un infarto del miocardio. El sistema fue testeado en un ensayo clínico randomizado en el cual a 55 pacientes se les dio el sistema para su uso por 21 semanas. De los resultados técnicos del ensayo se puede concluir que, a pesar de algunos errores menores prontamente corregidos durante el estudio, la plataforma es estable y fiable. Conclusiones La investigación llevada a cabo en esta Tesis y los resultados obtenidos proporcionan las respuestas a las tres preguntas de investigación que motivaron este trabajo: RQ1 Se ha desarrollado un modelo para representar el dominio de los sistemas personalizados de salud. La evaluación hecha por los expertos de la rama concluye que el modelo representa el dominio con precisión y con un balance apropiado entre abstracción y detalle. RQ2 Se ha desarrollado, con éxito, una plataforma de desarrollo basada en el modelo. RQ3 Se ha demostrado que la plataforma es capaz de ayudar a los desarrolladores en la creación de software pHealth complejos. Las ventajas de la plataforma han sido demostradas en el ámbito de un proyecto de gran escala, aunque el enfoque genérico adoptado indica que la plataforma podría ofrecer beneficios también en otros contextos. Los resultados de estas evaluaciones ofrecen indicios de que, ambos, el modelo y la plataforma serán buenos candidatos para poderse convertir en una referencia para futuros desarrollos de sistemas pHealth. ABSTRACT Background Europe is living in an unsustainable situation. The economic crisis has been reducing governments' economic resources since 2008 and threatening social and health systems, while the proportion of older people in the European population continues to increase so that it is foreseen that in 2050 there will be only two workers per retiree [54]. To this situation it should be added the rise, strongly related to age, of chronic diseases the burden of which has been estimated to be up to the 7% of a country's gross domestic product [51]. There is a need for a paradigm shift, the need for a new way of caring for people's health, shifting the focus from curing conditions that have arisen to a sustainable and effective approach with the emphasis on prevention. Some advocate the adoption of personalised health care (pHealth), a model where medical practices are tailored to the patient's unique life, from the detection of risk factors to the customization of treatments based on each individual's response [81]. Personalised health is often associated to the use of Information and Communications Technology (ICT), that, with its exponential development, offers interesting opportunities for improving healthcare. The shift towards pHealth is slowly taking place, both in research and in industry, but the change is not significant yet. Many barriers still exist related to economy, politics and culture, while others are purely technological, like the lack of interoperable information systems [199]. Though interoperability aspects are evolving, there is still the need of a reference design, especially tackling implementation and large scale deployment of pHealth systems. This thesis contributes to organizing the subject of ICT systems for personalised health into a reference model that allows for the creation of software development platforms to ease common development issues in the domain. Research questions RQ1 Is it possible to define a model, based on software engineering techniques, for representing the personalised health domain in an abstract and representative way? RQ2 Is it possible to build a development platform based on this model? RQ3 Does the development platform help developers create complex integrated pHealth systems? Methods As method for describing the model, the ISO/IEC/IEEE 42010 framework [25] is adopted for its generality and high level of abstraction. The model is specified in different parts: a conceptual model, which makes use of concept maps, for representing stakeholders, artefacts and shared information, and in scenarios and use cases for the representation of the functionalities of pHealth systems. The model was derived from literature analysis, including 7 industrial and scientific reports, 9 electronic standards, 10 conference proceedings papers, 37 journal papers, 25 websites and 5 books. Based on the reference model, requirements were drawn for building the development platform enriched with a set of requirements gathered in a survey run among 11 experienced engineers. For developing the platform, the continuous integration methodology [74] was adopted which allowed to perform automatic tests on a server and also to deploy packaged releases on a web site. As a validation methodology, a theory building framework for SW engineering was adopted from [181]. The framework, chosen as a guide to find evidence for justifying the research questions, imposed the creation of theories based on models and propositions to be validated within a scope. The validation of the model was conducted as an on-line survey in three validation rounds, encompassing a growing number of participants. The survey was submitted to 134 experts of the field and on some public channels like relevant mailing lists and social networks. Its objective was to assess the model's readability, its level of coverage of the domain and its potential usefulness in the design of actual, derived systems. The questionnaires included quantitative Likert scale questions and free text inputs for comments. The development platform was validated in two scopes. As a small-scale experiment, the platform was used in a 12 hours training session where 4 developers had to perform an exercise consisting in developing a set of typical pHealth use cases At the end of the session, a focus group was held to identify benefits and drawbacks of the platform. The second validation was held as a test-case study in a large scale research project called HeartCycle the aim of which was to develop a closed-loop disease management system for heart failure and coronary heart disease patients [160]. During this project three applications were developed by a team of programmers and designers. One of these applications was tested in a clinical trial with actual patients. At the end of the project, the team was interviewed in a focus group to assess the role the platform had within the project. Results For what regards the model that describes the pHealth domain, its conceptual part includes a description of the main roles and concerns of pHealth stakeholders, a model of the ICT artefacts that are commonly adopted and a model representing the typical data that need to be formalized among pHealth systems. The functional model includes a set of 18 scenarios, divided into assisted person's view, caregiver's view, developer's view, technology and services providers' view and authority's view, and a set of 52 Use Cases grouped in 6 categories: assisted person's activities, system reactions, caregiver's activities, user engagement, developer's activities and deployer's activities. For what concerns the validation of the model, a total of 65 people participated in the online survey providing their level of agreement in all the assessed dimensions and a total of 248 comments on how to improve and complete the model. Participants' background spanned from engineering and software development (70%) to medical specialities (15%), with declared interest in the fields of eHealth (24%), mHealth (16%), Ambient Assisted Living (21%), Personalized Medicine (5%), Personal Health Systems (15%), Medical Informatics (10%) and Biomedical Engineering (8%) with an average of 7.25_4.99 years of experience in these fields. From the analysis of the answers it is possible to observe that the contacted experts considered the model easily readable (average of 1.89_0.79 being 1 the most favourable scoring and 5 the worst), sufficiently abstract (1.99_0.88) and formal (2.13_0.77) for its purpose, with a sufficient coverage of the domain (2.26_0.95), useful for describing the domain (2.02_0.7) and for generating more specific systems (2_0.75) and they reported a partial interest in using the model in their job (2.48_0.91). Thanks to their comments, the model was improved and enriched with concepts that were missing at the beginning, nonetheless it was not possible to prove an improvement among the iterations, due to the diversity of the participants in the three rounds. From the model, a development platform for the pHealth domain was generated called pHealth Patient Platform (pHPP). The platform includes a set of libraries, programming and deployment tools, a tutorial and a sample application. The main four modules of the architecture are: the Data Collection Engine, which allows abstracting sources of information like sensors or external services, mapping data to databases and ontologies, and allowing event-based interaction and filtering, the GUI Engine, which abstracts the user interface in a message-like interaction model, the Workow Engine, which allows programming the application's user interaction ows with graphical workows, and the Rule Engine, which gives developers a simple means for programming the application's logic in the form of \if-then" rules. After the 5 years experience of HeartCycle, partially programmed with pHPP, 5 developers were joined in a focus group to discuss the advantages and drawbacks of the platform. The view that emerged from the training course and the focus group was that the platform is well-suited to the needs of the engineers working in the field, it allowed the separation of concerns among the different specialities and it simplified some common development tasks like data management and asynchronous interaction. Nevertheless, some deficiencies were pointed out in terms of a lack of maturity of some technological choices, and for the absence of some domain-specific tools, e.g. for data processing or for health-related communication protocols. Within HeartCycle, the platform was used to develop part of the Guided Exercise system, a composition of ICT tools for the physical rehabilitation of patients who suffered from myocardial infarction. The system developed using the platform was tested in a randomized controlled clinical trial, in which 55 patients used the system for 21 weeks. The technical results of this trial showed that the system was stable and reliable. Some minor bugs were detected, but these were promptly corrected using the platform. This shows that the platform, as well as facilitating the development task, can be successfully used to produce reliable software. Conclusions The research work carried out in developing this thesis provides responses to the three three research questions that were the motivation for the work. RQ1 A model was developed representing the domain of personalised health systems, and the assessment of experts in the field was that it represents the domain accurately, with an appropriate balance between abstraction and detail. RQ2 A development platform based on the model was successfully developed. RQ3 The platform has been shown to assist developers create complex pHealth software. This was demonstrated within the scope of one large-scale project, but the generic approach adopted provides indications that it would offer benefits more widely. The results of these evaluations provide indications that both the model and the platform are good candidates for being a reference for future pHealth developments.

AFRICA BUILD Portal: developing a social network of African health researchers and educators

One of the main outputs of the project is a collaborative platform which integrates a myriad of research and learning resources. This article presents the first prototype of this platform: the AFRICA BUILD Portal (ABP 1.0). The ABP is a Web 2.0 platform which facilitates the access, in a collaborative manner, to these resources. Through a usable web interface, the ABP has been designed to avoid, as much as possible, the connectivity problems of African institutions. In this paper, we suggest that the access to complex systems does not imply slow response rates, and that their development model guides the project to a natural technological transfer, adaptation and user acceptance. Finally, this platform aims to motivate research attitudes during the learning process and stimulate user?s collaborations.