Modelo de gestión para la atención integral de pacientes con enfermedades huérfanas o raras en Colombia

Las enfermedades raras o huérfanas corresponden a aquellas con baja prevalencia en la población, y en varios países tienen una definición distinta de acuerdo con el número de pacientes que afectan en la población. La Organización Mundial de la Salud (OMS), las define como un trastorno que afecta de 650 a 1.000 personas por millón de habitantes, de las que se han identificado alrededor de 7.000. En Colombia su prevalencia es menor de 1 por cada 5.000 personas y comprenden: las enfermedades raras, las ultra-huérfanas y las olvidadas. Los pacientes con este tipo de enfermedades imponen retos a los sistemas sanitarios, pues si bien afectan a un bajo porcentaje de la población, su atención implica una alta carga económica por los costos que involucra su atención, la complejidad en su diagnóstico, tratamiento, seguimiento y rehabilitación. El abordaje de las enfermedades raras requiere un manejo interdisciplinar e intersectorial, lo que implica la organización de cada actor del sistema sanitario para su manejo a través de un modelo que abraque las dinámicas posibles entre ellos y las competencias de cada uno. Por lo anterior, y teniendo en cuenta la necesidad de formular políticas sanitarias específicas para la gestión de estas enfermedades, el presente trabajo presenta una aproximación a la formulación de un modelo de gestión para la atención integral de pacientes con enfermedades raras en Colombia. Esta investigación describe los distintos elementos y características de los modelos de gestión clínica y de las enfermedades raras a través de una revisión de literatura, en la que se incluye la descripción de los distintos actores del Sistema de Salud Colombiano, relacionados con la atención integral de estos pacientes para la documentación de un modelo de gestión integral.

Actitudes hacia la Enfermedad del Alzheimer según el género y la edad de adultos colombianos

La enfermedad de Alzheimer (EA) es la demencia más frecuente y su prevalencia continúa en aumento tanto en Colombia como en el mundo. Esta investigación tuvo como objetivo explorar si las actitudes hacia la EA varían según la edad y género de 450 personas adultas colombianas. Se realizó un estudio exploratorio de corte transversal en el que se aplicó un cuestionario autodiligenciado. Se encontró que efectivamente hay algunas diferencias según la edad y el género en el componente cognoscitivo (creencias y conocimiento) y conductual (intención conductual y conducta) de las actitudes; y diferencias según el género en el componente afectivo. Se concluye que los conocimientos sobre la EA son escasos, que la tristeza es la emoción predominante hacia la EA y que es un tema de interés en el que predomina la idea de que afecta especialmente la memoria. Se discutieron los resultados reconociendo que esta es una aproximación inicial a las actitudes hacia la EA.

Business Process Redesign in Information Technology Incident Management: A teaching case

This paper consists of a detailed case narrative on how a leading Australian Finance organisation has utilised contemporary Business Process Management (BPM) concepts for improving the IT incident management processes within the whole organisation. The target audience includes practitioners who are interested in BPM case studies and Academics who may be seeking case studies for innovative teaching practices.

Urban sustainability and growth management in south-east Asian city-regions : the case of Kuala Lumpur and Hong Kong

Major South-East Asian city-regions have experienced considerable physical, economic and social transformations during the past three decades. The rapid pace of globalisation and economic restructuring has resulted in these city-regions receiving the full impact of urbanisation pressures. In an attempt to ease these pressures, city-regions such as Bangkok, Seoul, Tokyo, Taipei, Hong Kong, Singapore and Kuala Lumpur have advocate growth management approaches giving particular interest to urban sustainability. These approaches promote efforts to achieve the triple bottom line sustainability by balancing economic and social development, and environmental protection, and putting more emphasis on compact and optimum development of urban forms. This paper evaluates the case of two South-East Asian city-regions, Kuala Lumpur and Hong Kong, and assesses their experiences in managing their urban forms whilst promoting sustainable patterns of urban development. The findings show that sustainable urban development initiatives employing a top down approach has yielded encouraging results in these case study city-regions. However the need for a more concerted effort towards the overall sustainability agenda still remains vital.

The public management issues of access to electronic gaming machines (EGMs) : a case study of policy in Victoria, its effects and requirements for evaluation

Wynne and Schaffer (2003) have highlighted both the strong growth of gambling activity in recent years, and the revenue streams this has generated for governments and communities. Gambling activities and the revenues derived from them have, unsurprisingly, therefore also been seen as a way in which to increase economic development in deprived areas (Jinkner-Lloyd, 1996). Consequently, according to Brown et al (2003), gambling is now a large taxation revenue earner for many western governments, at both federal and state levels, worldwide (for example UK, USA, Australia). In size and importance, the Australian gambling industry in particular has grown significantly over the last three decades, experiencing a fourfold increase in real gambling turnover. There are, however, also concerns expressed about gambling and Electronic Gaming in particular, as illustrated in economic, social and ethical terms in Oddo (1997). There are also spatial aspects to understanding these issues. Marshall’s (1998) study, for example, highlights that benefits from gambling are more likely to accrue at the macro as opposed to the local level, because of centralised tax gathering and spending of tax revenues, whilst localities may suffer from displacement of activities with higher multipliers than the institutions with EGMs that replace them. This also highlights a regional context of costs, where benefits accrue to the centre, but the costs accrue to the regions and localities, as simultaneously resources leave those communities through both the gambling activities themselves (in the form of revenue for the EGM owners), and the government (through taxes).

Five case studies applying soft systems methodology to knowledge management

Construction projects are faced with a challenge that must not be underestimated. These projects are increasingly becoming highly competitive, more complex, and difficult to manage. They become problems that are difficult to solve using traditional approaches. Soft Systems Methodology (SSM) is a systems approach that is used for analysis and problem solving in such complex and messy situations. SSM uses “systems thinking” in a cycle of action research, learning and reflection to help understand the various perceptions that exist in the minds of the different people involved in the situation. This paper examines the benefits of applying SSM to problems of knowledge management in construction project management, especially those situations that are challenging to understand and difficult to act upon. It includes five case studies of its use in dealing with the confusing situations that incorporate human, organizational and technical aspects.

An indexing model for sustainable urban environmental management : the case of Gold Coast, Australia

Improving urban ecosystems and the quality of life of citizens have become a central issue in the global effort of creating sustainable built environments. As human beings our lives completely depend on the sustainability of the nature and we need to protect and manage natural resources in a more sustainable way in order to sustain our existence. As a result of population growth and rapid urbanisation, increasing demand of productivity depletes and degrades natural resources. However, the increasing activities and rapid development require more resources, and therefore, ecological planning becomes an essential vehicle in preserving scarce natural resources. This paper aims to indentify the interation between urban ecosystems and human activities in the context of urban sustainability and explores the degrading environmental impacts of this interaction and the necessity and benefits of using sustainability indicators as a tool in sustainable urban evnironmental management. Additionally, the paper also introduces an environmental sustainability indexing model (ASSURE) as an innovative approach to evaluate the environmental conditions of built environment.

Building partnerships as a key strategy in developing an event management model for an international dance event : a case study of the 2008 WDA (World Dance Alliance) Global Summit, Brisbane, Australia

With the increasing growth of cultural events both in Australia and internationally, there has also been an increase in event management studies; in theory and in practice. Although a series of related knowledge and skills required specifically by event managers has already been identified by many researchers (Perry et al., 1996; Getz, 2002 & Silvers et al., 2006) and generic event management models proposed, including ‘project management’ strategies in an event context (Getz, 2007), knowledge gaps still exist in relation to identifying specific types of events, especially for not-for-profit arts events. For events of a largely voluntary nature, insufficient resources are recognised as the most challenging; including finance, human resources and infrastructure. Therefore, the concepts and principles which are adopted by large scale commercial events may not be suitable for not-for-profit arts events aiming at providing professional network opportunities for artists. Building partnerships are identified as a key strategy in developing an effective event management model for this type of event. Using the 2008 World Dance Alliance Global Summit (WDAGS) in Brisbane 13-18 July, as a case study, the level, nature and relationship of key partners are investigated. Data is triangulated from interviews with organisers of the 2008 WDAGS, on-line and email surveys of delegates, participant observation and analysis of formal and informal documents, to produce a management model suited to this kind of event.

Risk management in the Lusoponte concession : a case study of the two bridges in Lisbon, Portugal

The case study of Lusoponte illustrates the concession awarded by the Portuguese Government to finance, design, build and operate two bridges over the Tagus in Lisbon, Portugal. It includes an overview of the project's background and an analysis of the main risk categories stating both the actual risks encountered and the mitigation measures adopted. Throughout the project a great attention was given to whole life cycle costs, and gains in efficiency and cost control. Among the lessons that can be learned from both the public and private sector is that a complete risk management analysis must include not only the technical factors but also a realistic assessment of environmental and social risks. These were the risks that were somewhat overseen and that caused the main problems to the project's development.

Organisational challenges in understanding and implementing effective buiness continuity management strategies in a complex and critical organisation : an airport case study

With the increasing complexity of modern day threats and the growing sophistication of interlinked and interdependent operating environments, Business Continuity Management (BCM) has emerged as a new discipline, offering a strategic approach to safeguarding organisational functions. Of significant interest is the application of BCM frameworks and strategies within critical infrastructure, and in particular the aviation industry. Given the increased focus on security and safety for critical infrastructures, research into the adoption of BCM principles within an airport environment provides valuable management outcomes and research into a previously neglected area of inquisition. This research has used a single case study methodology to identify possible impediments to BCM adoption and implementation by the Brisbane Airport Corporation (BAC). It has identified a number of misalignments between the required breadth of focus for a BCM program, identified differing views on specific roles and responsibilities required during a major disruptive event and illustrated the complexities of the Brisbane Airport which impede the understanding and implementation of effective Business Continuity Management Strategies.