Esta dissertação é composta por dois ensaios sobre economia da saúde. O primeiro ensaio tem como objetivo analisar o ambiente regulatório no mercado de medicamentos para doenças raras. Essas doenças são caracterizadas por afetar um pequeno número de indivíduos em uma determinada população e por serem crônicas, progressivas, degenerativas, 80% são de origem genética, 50% afetam as crianças, das quais 30% morrem antes dos 5 anos de idade. Elas representam risco de morte e um custo socioeconômico alto para o paciente e sua família. Devido à raridade, a indústria farmacêutica tem não demonstra interesse em desenvolver novos medicamentos órfãos. Apesar de individualmente raras, estima-se que o número de casos de alcançar 420 a 560 milhões de pessoas. Para a referida análise foi utilizado o modelo econômico desenvolvido por DeBrock (1985), que consiste na determinação simultânea de esforço de inovação e extensão de patentes, estabelecendo a trajetória ótima de proteção como resultado de um jogo não cooperativo entre o regulador e a empresa inovadora. Foram identificados individualmente os principais incentivos e instrumentos de regulação econômica. Eles são compostos por assistência à protocolos, procedimento centralizado de análise, reduções de taxas, o acesso de pesquisa financiado e exclusividade de mercado. Conclui-se que o instrumento regulatório mais importante foi a exclusividade de mercado, pois garante lucros extraordinários para a empresa inovadora, tornando o desenvolvimento de novas drogas tornou-se economicamente viável. No entanto, ressalta-se que todos os mecanismos tem um papel importante no sistema de incentivos e que cada um deles deve ser considerado para o desenvolvimento de políticas públicas para doenças raras. O segundo ensaio tem como objetivo medir o impacto do Diabete Melito nos rendimentos dos trabalhadores brasileiros no ano de 2008. Essa doença é caracterizada pelo elevado nível de glicose no sangue, problema que pode desencadear desencadeia má cicatrização, ataque cardíaco, acidente vascular cerebral, insuficiência renal, problemas de visão e amputação de membros. Dados do Ministério da Saúde indicam que, no Brasil, em 2010, havia cerca de 10 milhões de casos da doença, sendo a quarta principal causa de morte no país. Dados da WHO estimam que a prevalência da doença no Brasil é de 10,2% da população, cerca de 20 milhões de pessoas. A hipótese a ser testada é que o estado de saúde interfere nos rendimentos por meio de três mecanismos distintos: (i) na decisão de participar no mercado de trabalho, mensurado por meio de um Probit binário, (ii) na quantidade de horas trabalhadas e (iii) a produtividade por hora, ambos mensurados por meio do método de dois estágios de Heckman. Cada modelo é estimado separadamente para indivíduos com e sem doenças, sendo tomada a diferença do valor esperado de ambos para capturar o efeito contrafactual. Os resultados obtidos indicaram a existência de perdas progressivas, que incidem com maior intensidade entre a população feminina e que, no agregado, podem chegar ao valor de R$ 8.064.408.441.99 (USD 3.450.709.518,02 e EUR 2.490.436.905,56), correspondendo a cerca de 0,54% dos rendimentos totais e 0,20% do PIB do referido ano. Concluiu-se que o Diabete Melito gera perdas significativas na renda dos trabalhadores brasileiros, especialmente em relação à sua participação no mercado de trabalho. Os resultados indicam que as políticas públicas devem ser direcionadas para a prevenção da doença, uma vez que o desenvolvimento de comorbidades amplifica o efeito de perdas. Por fim, visando a manter a inter-relação entre os temas e a estabelecer a unidade do trabalho, foram abordadas na última seção as conclusões a respeito da dissertação. / This dissertation consists of two essays on health economics. The aim of the first essay is to analyze the regulatory environment for medicinal products for rare diseases. These diseases are characterized by to affect a small number of individuals in a given population and to be chronic, progressive, degenerative, 80% are genetic in origin, 50% affect children, of which 30% die before the age of 5. They represent death risk and a high socioeconomic cost to the patient and his family. Due to the rarity, pharmaceutical industry has not shown interest in developing new orphan drugs. Although individually rare, estimatives show that the number of cases to reach 420 million to 560 million people. For this analysis the economic model developed by DeBrock (1985), which consists of the simultaneous determination of innovation effort and extension of patents, establishing the optimal path protection as a result of a non-cooperative game between the regulator and the innovator was used. The main incentives and instruments of economic regulation were individually identified. They are protocols assistance, centralized analysis procedure, fee reductions, access to funded research and market exclusivity. We conclude that the most important regulatory tool was market exclusivity, because it ensures extraordinary profits for the innovator, making the development of new drugs become economically viable. However, it is noteworthy that all the mechanisms have an important role in the incentive system and that each of them should be considered for the development of public policies for rare diseases. The second essay aims to measure the impact of diabetes mellitus on the income of Brazilian workers in 2008. The main disease characteristic is high blood glucose, a problem that can trigger scarring troubles, heart attack, stroke, failure kidney, vision problems and limbs amputation. Ministry of Health data indicate that, in Brazil, in 2010, there were about 10 million cases of the disease, making it the fourth leading cause of death in the country. WHO data estimate that the disease prevalence is 10.2% of the Brazilian population, about 20 million people. The hypothesis to be tested is that the health status interfere in worker income through three distinct mechanisms: (i) in the decision to participate in the labor market, measured by means of a binary Probit, (ii) in the amount of hours worked and (iii) in the productivity per hour, both measured by the Heckman two-stage method. Each model is estimated separately for individuals with and without disease, and taking the difference of the expected value of both to capture the counterfactual effect. The results indicated the existence of progressive losses, which focus more strongly among women and that, in the aggregate, may reach R$ 8.064.408.441.99 (3,450,709,518.02 USD and EUR 2,490,436,905, 56), corresponding to about 0.54% of the total income and 0.20% of GDP in that year. It was concluded that diabetes mellitus causes significant losses in Brazilian workers income, especially in relation to their participation in the labor market. The results indicate that public policies should be directed to the prevention of disease, since the development of comorbidities amplifies the losses effect. Finally, to keep the inter-relationship between the issues and to establish the unity of the work, have been addressed in the last section the conclusions regarding the dissertation.

This thesis dedicates to implementation of the boys' orphanage in developing country. The project belongs to Little Noah Foundation, while significant partner for direct realization is non-government organization Njovu. This thesis is classically created by theoretical and practical parts. The theoretical part defines frequented concepts, informs about actual situation in the country, especially in west province of Zambia, and contains information about organizations participated into this project. The practical part continues to theoretical knowledge, defines goal and methodology of thesis and mainly presents results of its. The goal, which follows this thesis, is to map out the progress of boys' orphanage in Mongu. In the line with the thesis they are asked these research questions: Why was this boys' orphanage established in Mongu? How was the project progressing? What are the results of the project? I have chosen qualitative research to answer the research questions. During my residence there and active participating to realization of project (February December 2014) I have used methods of observation, questioning and analysis of the data. The results of this thesis are created by profound SWOT analysis of the project, approach of personal securing, describing of process of intake of children and case reports of adopted children, whose value is in demonstrating of local social reality. Numerous supplements illustrate presented information. Discussion summarizes and recapitulates results and their outputs are recommendations and notices for similar starting projects. Very important aspect for whole thesis is to implant it into the context of very different conditions. The contribution of the project is especially in promoting of family model of childcare in institution. Family character of this orphanage is specified by relatively low number of children and the caregivers are married couple with two own children. This thesis brings interrelated and concrete and detailed information about whole project and its progress. This thesis may be used like source of information about concrete project, like documentation of start of Little Noah Children's Home and as well it can be some kind of inspiration for similar projects in developing countries.

Esta dissertação é composta por dois ensaios sobre economia da saúde. O primeiro ensaio tem como objetivo analisar o ambiente regulatório no mercado de medicamentos para doenças raras. Essas doenças são caracterizadas por afetar um pequeno número de indivíduos em uma determinada população e por serem crônicas, progressivas, degenerativas, 80% são de origem genética, 50% afetam as crianças, das quais 30% morrem antes dos 5 anos de idade. Elas representam risco de morte e um custo socioeconômico alto para o paciente e sua família. Devido à raridade, a indústria farmacêutica tem não demonstra interesse em desenvolver novos medicamentos órfãos. Apesar de individualmente raras, estima-se que o número de casos de alcançar 420 a 560 milhões de pessoas. Para a referida análise foi utilizado o modelo econômico desenvolvido por DeBrock (1985), que consiste na determinação simultânea de esforço de inovação e extensão de patentes, estabelecendo a trajetória ótima de proteção como resultado de um jogo não cooperativo entre o regulador e a empresa inovadora. Foram identificados individualmente os principais incentivos e instrumentos de regulação econômica. Eles são compostos por assistência à protocolos, procedimento centralizado de análise, reduções de taxas, o acesso de pesquisa financiado e exclusividade de mercado. Conclui-se que o instrumento regulatório mais importante foi a exclusividade de mercado, pois garante lucros extraordinários para a empresa inovadora, tornando o desenvolvimento de novas drogas tornou-se economicamente viável. No entanto, ressalta-se que todos os mecanismos tem um papel importante no sistema de incentivos e que cada um deles deve ser considerado para o desenvolvimento de políticas públicas para doenças raras. O segundo ensaio tem como objetivo medir o impacto do Diabete Melito nos rendimentos dos trabalhadores brasileiros no ano de 2008. Essa doença é caracterizada pelo elevado nível de glicose no sangue, problema que pode desencadear desencadeia má cicatrização, ataque cardíaco, acidente vascular cerebral, insuficiência renal, problemas de visão e amputação de membros. Dados do Ministério da Saúde indicam que, no Brasil, em 2010, havia cerca de 10 milhões de casos da doença, sendo a quarta principal causa de morte no país. Dados da WHO estimam que a prevalência da doença no Brasil é de 10,2% da população, cerca de 20 milhões de pessoas. A hipótese a ser testada é que o estado de saúde interfere nos rendimentos por meio de três mecanismos distintos: (i) na decisão de participar no mercado de trabalho, mensurado por meio de um Probit binário, (ii) na quantidade de horas trabalhadas e (iii) a produtividade por hora, ambos mensurados por meio do método de dois estágios de Heckman. Cada modelo é estimado separadamente para indivíduos com e sem doenças, sendo tomada a diferença do valor esperado de ambos para capturar o efeito contrafactual. Os resultados obtidos indicaram a existência de perdas progressivas, que incidem com maior intensidade entre a população feminina e que, no agregado, podem chegar ao valor de R$ 8.064.408.441.99 (USD 3.450.709.518,02 e EUR 2.490.436.905,56), correspondendo a cerca de 0,54% dos rendimentos totais e 0,20% do PIB do referido ano. Concluiu-se que o Diabete Melito gera perdas significativas na renda dos trabalhadores brasileiros, especialmente em relação à sua participação no mercado de trabalho. Os resultados indicam que as políticas públicas devem ser direcionadas para a prevenção da doença, uma vez que o desenvolvimento de comorbidades amplifica o efeito de perdas. Por fim, visando a manter a inter-relação entre os temas e a estabelecer a unidade do trabalho, foram abordadas na última seção as conclusões a respeito da dissertação. / This dissertation consists of two essays on health economics. The aim of the first essay is to analyze the regulatory environment for medicinal products for rare diseases. These diseases are characterized by to affect a small number of individuals in a given population and to be chronic, progressive, degenerative, 80% are genetic in origin, 50% affect children, of which 30% die before the age of 5. They represent death risk and a high socioeconomic cost to the patient and his family. Due to the rarity, pharmaceutical industry has not shown interest in developing new orphan drugs. Although individually rare, estimatives show that the number of cases to reach 420 million to 560 million people. For this analysis the economic model developed by DeBrock (1985), which consists of the simultaneous determination of innovation effort and extension of patents, establishing the optimal path protection as a result of a non-cooperative game between the regulator and the innovator was used. The main incentives and instruments of economic regulation were individually identified. They are protocols assistance, centralized analysis procedure, fee reductions, access to funded research and market exclusivity. We conclude that the most important regulatory tool was market exclusivity, because it ensures extraordinary profits for the innovator, making the development of new drugs become economically viable. However, it is noteworthy that all the mechanisms have an important role in the incentive system and that each of them should be considered for the development of public policies for rare diseases. The second essay aims to measure the impact of diabetes mellitus on the income of Brazilian workers in 2008. The main disease characteristic is high blood glucose, a problem that can trigger scarring troubles, heart attack, stroke, failure kidney, vision problems and limbs amputation. Ministry of Health data indicate that, in Brazil, in 2010, there were about 10 million cases of the disease, making it the fourth leading cause of death in the country. WHO data estimate that the disease prevalence is 10.2% of the Brazilian population, about 20 million people. The hypothesis to be tested is that the health status interfere in worker income through three distinct mechanisms: (i) in the decision to participate in the labor market, measured by means of a binary Probit, (ii) in the amount of hours worked and (iii) in the productivity per hour, both measured by the Heckman two-stage method. Each model is estimated separately for individuals with and without disease, and taking the difference of the expected value of both to capture the counterfactual effect. The results indicated the existence of progressive losses, which focus more strongly among women and that, in the aggregate, may reach R$ 8.064.408.441.99 (3,450,709,518.02 USD and EUR 2,490,436,905, 56), corresponding to about 0.54% of the total income and 0.20% of GDP in that year. It was concluded that diabetes mellitus causes significant losses in Brazilian workers income, especially in relation to their participation in the labor market. The results indicate that public policies should be directed to the prevention of disease, since the development of comorbidities amplifies the losses effect. Finally, to keep the inter-relationship between the issues and to establish the unity of the work, have been addressed in the last section the conclusions regarding the dissertation.

Master of Agribusiness / Department of Agricultural Economics / Vincent Amanor-Boadu / Most corporations seem geared to buy assets, not sell them. Estimates suggest corporations acquire three businesses for every one they divest (Mankins 2008). A corporation with a disciplined approach to divestiture seems more likely to sharpen strategic focus and deliver value to shareholders. This thesis defines and explores the concept of an orphan product as an opportunity for divestiture from a parent company and subsequent acquisition for a startup company. Orphan product is defined by reviewing literature and selecting the following criteria for a given product; the product has a lack of marketing support/focus, the product is not considered core to the parent company, product sales trend over a 5-year time frame is decreasing, cash flows are uncertain, market growth for the category the product competes in is smaller than the industry average, the product life cycle position is mature, and portfolio synergy is low due to the parent company having other products that deliver similar benefits. A scorecard is developed and used to score orphan characteristics of four products in the animal health industry. Two of the four products analyzed are classified as orphan products and therefore potential candidates for purchase by the startup company. A Strategy Canvas is developed and value curves are assigned per product to show how the startup company can market an acquired product relative to the critical success factors in the animal health industry (Kim and Mauborgne, 2005). A framework of critical questions is posed to each product resulting in recommendations for the startup on critical success factors to eliminate, reduce, raise, or create. For the orphan products, a recommendations include: raise price, increase marketing support, and/or create new factors to differentiate such as to offer additional services or to develop pricing models that are simple and clear. Application of this research can be applied to companies seeking to acquire animal health products that would like to better understand how to improve their chances for success.

Esta dissertação é composta por dois ensaios sobre economia da saúde. O primeiro ensaio tem como objetivo analisar o ambiente regulatório no mercado de medicamentos para doenças raras. Essas doenças são caracterizadas por afetar um pequeno número de indivíduos em uma determinada população e por serem crônicas, progressivas, degenerativas, 80% são de origem genética, 50% afetam as crianças, das quais 30% morrem antes dos 5 anos de idade. Elas representam risco de morte e um custo socioeconômico alto para o paciente e sua família. Devido à raridade, a indústria farmacêutica tem não demonstra interesse em desenvolver novos medicamentos órfãos. Apesar de individualmente raras, estima-se que o número de casos de alcançar 420 a 560 milhões de pessoas. Para a referida análise foi utilizado o modelo econômico desenvolvido por DeBrock (1985), que consiste na determinação simultânea de esforço de inovação e extensão de patentes, estabelecendo a trajetória ótima de proteção como resultado de um jogo não cooperativo entre o regulador e a empresa inovadora. Foram identificados individualmente os principais incentivos e instrumentos de regulação econômica. Eles são compostos por assistência à protocolos, procedimento centralizado de análise, reduções de taxas, o acesso de pesquisa financiado e exclusividade de mercado. Conclui-se que o instrumento regulatório mais importante foi a exclusividade de mercado, pois garante lucros extraordinários para a empresa inovadora, tornando o desenvolvimento de novas drogas tornou-se economicamente viável. No entanto, ressalta-se que todos os mecanismos tem um papel importante no sistema de incentivos e que cada um deles deve ser considerado para o desenvolvimento de políticas públicas para doenças raras. O segundo ensaio tem como objetivo medir o impacto do Diabete Melito nos rendimentos dos trabalhadores brasileiros no ano de 2008. Essa doença é caracterizada pelo elevado nível de glicose no sangue, problema que pode desencadear desencadeia má cicatrização, ataque cardíaco, acidente vascular cerebral, insuficiência renal, problemas de visão e amputação de membros. Dados do Ministério da Saúde indicam que, no Brasil, em 2010, havia cerca de 10 milhões de casos da doença, sendo a quarta principal causa de morte no país. Dados da WHO estimam que a prevalência da doença no Brasil é de 10,2% da população, cerca de 20 milhões de pessoas. A hipótese a ser testada é que o estado de saúde interfere nos rendimentos por meio de três mecanismos distintos: (i) na decisão de participar no mercado de trabalho, mensurado por meio de um Probit binário, (ii) na quantidade de horas trabalhadas e (iii) a produtividade por hora, ambos mensurados por meio do método de dois estágios de Heckman. Cada modelo é estimado separadamente para indivíduos com e sem doenças, sendo tomada a diferença do valor esperado de ambos para capturar o efeito contrafactual. Os resultados obtidos indicaram a existência de perdas progressivas, que incidem com maior intensidade entre a população feminina e que, no agregado, podem chegar ao valor de R$ 8.064.408.441.99 (USD 3.450.709.518,02 e EUR 2.490.436.905,56), correspondendo a cerca de 0,54% dos rendimentos totais e 0,20% do PIB do referido ano. Concluiu-se que o Diabete Melito gera perdas significativas na renda dos trabalhadores brasileiros, especialmente em relação à sua participação no mercado de trabalho. Os resultados indicam que as políticas públicas devem ser direcionadas para a prevenção da doença, uma vez que o desenvolvimento de comorbidades amplifica o efeito de perdas. Por fim, visando a manter a inter-relação entre os temas e a estabelecer a unidade do trabalho, foram abordadas na última seção as conclusões a respeito da dissertação. / This dissertation consists of two essays on health economics. The aim of the first essay is to analyze the regulatory environment for medicinal products for rare diseases. These diseases are characterized by to affect a small number of individuals in a given population and to be chronic, progressive, degenerative, 80% are genetic in origin, 50% affect children, of which 30% die before the age of 5. They represent death risk and a high socioeconomic cost to the patient and his family. Due to the rarity, pharmaceutical industry has not shown interest in developing new orphan drugs. Although individually rare, estimatives show that the number of cases to reach 420 million to 560 million people. For this analysis the economic model developed by DeBrock (1985), which consists of the simultaneous determination of innovation effort and extension of patents, establishing the optimal path protection as a result of a non-cooperative game between the regulator and the innovator was used. The main incentives and instruments of economic regulation were individually identified. They are protocols assistance, centralized analysis procedure, fee reductions, access to funded research and market exclusivity. We conclude that the most important regulatory tool was market exclusivity, because it ensures extraordinary profits for the innovator, making the development of new drugs become economically viable. However, it is noteworthy that all the mechanisms have an important role in the incentive system and that each of them should be considered for the development of public policies for rare diseases. The second essay aims to measure the impact of diabetes mellitus on the income of Brazilian workers in 2008. The main disease characteristic is high blood glucose, a problem that can trigger scarring troubles, heart attack, stroke, failure kidney, vision problems and limbs amputation. Ministry of Health data indicate that, in Brazil, in 2010, there were about 10 million cases of the disease, making it the fourth leading cause of death in the country. WHO data estimate that the disease prevalence is 10.2% of the Brazilian population, about 20 million people. The hypothesis to be tested is that the health status interfere in worker income through three distinct mechanisms: (i) in the decision to participate in the labor market, measured by means of a binary Probit, (ii) in the amount of hours worked and (iii) in the productivity per hour, both measured by the Heckman two-stage method. Each model is estimated separately for individuals with and without disease, and taking the difference of the expected value of both to capture the counterfactual effect. The results indicated the existence of progressive losses, which focus more strongly among women and that, in the aggregate, may reach R$ 8.064.408.441.99 (3,450,709,518.02 USD and EUR 2,490,436,905, 56), corresponding to about 0.54% of the total income and 0.20% of GDP in that year. It was concluded that diabetes mellitus causes significant losses in Brazilian workers income, especially in relation to their participation in the labor market. The results indicate that public policies should be directed to the prevention of disease, since the development of comorbidities amplifies the losses effect. Finally, to keep the inter-relationship between the issues and to establish the unity of the work, have been addressed in the last section the conclusions regarding the dissertation.

A orfandade é um tema bastante recorrente na literatura infantil e juvenil. Desde as antigas narrativas orais, como os contos de fadas, por exemplo, o arquétipo do órfão é revisitado regularmente na construção de diferentes personagens, sendo mantida, porém, uma estrutura básica predominante, principalmente no que concerne à sua trajetória. Investigar a recorrência dessa temática, partindo da análise de alguns contos populares até alcançar as mais recentes obras voltadas para o público jovem, foi um dos objetivos desta pesquisa. Uma outra meta foi estabelecer paralelos e divergências entre as figuras secundárias que compõem essas narrativas, como as madrinhas, as madrastas, os irmãos, os amigos, os seres mágicos, entre outros, e focalizar o papel que elas desempenham na trajetória do órfão, agindo ora como \"desvios\", ora como \"atalhos\" em seu caminho. Um terceiro propósito da dissertação foi estudar a circulação da personagem órfã contemporânea entre a literatura e outras mídias, como as histórias em quadrinhos (HQ) e o cinema. Para isso, tomamos três personagens da ficção criadas originalmente para três diferentes suportes - Harry Potter (literatura), Peter Parker (HQ) e Luke Skywalker (cinema) - e procuramos estabelecer similaridades e divergências em três momentos de seus percursos: partida, iniciação e retorno. Ao compararmos as trajetórias desses três heróis órfãos, podemos perceber as visíveis intersecções entre elas e somos levados a crer que, mesmo modificadas pelos estilos literários e pelas mídias que lhes servem de suporte, essas personagens solitárias conservam, contudo, a essência das características de seu remoto substrato popular, proveniente da oralidade. / Orphanhood is quite a common theme in Children\'s Literature. From the old oral stories, as the fairy tales, for instance, the orphan archetype is regularly used in order to build different characters, keeping, however, a predominant basic structure, chiefly with regard to his path. Investigating the frequency of such a theme starting from the analysis of some popular tales and finally reaching the most recent works, offered to young people, was one of the purposes of this research. Another aim was to establish parallels and divergences ocurring to secondary characters that take part in those narratives, as the godmothers, stepmothers, brothers and sisters, magic creatures, among others, and focusing the role they play in the development of the orphan course, acting sometimes as \"sidetracks\", sometimes as \"shortcuts\" in his way. A third goal of this work was to study the circulation of the contemporary orphan character both in literature and other mass media, as comics and movies. For this purpose we chose three fiction characters, created originally for three different supports - Harry Potter (literature), Peter Parker (comics) and Luke Skywlaker (movies) - and tried to show similarities and differences in three moments of their route: start, initiation and return. Comparing the footsteps of those three orphan heroes, we may note the visible intersections among them and take into account that, even changed by literary style and mass media which support them, those solitary characters keep, nevertheless, the essence of the characteristics of their ancient popular substractum, coming from orality.

This dissertation assesses the Swedish and the United Kingdom (UK) legislative frameworks for cross-border copyright clearance of orphan works in mass-digitisation schemes. By reviewing relevant copyright frameworks and practices around the world, interviewing Swedish and British experts in the field of libraries and copyright, and discussing the national solutions applied in Sweden and the UK, conclusions are drawn to form a roadmap for future policy work in the area. The findings are that even though copyright clearance systems for orphan works work well in their national context, they wouldn’t be transferable to a cross-border context due to the different legal and societal traditions in the EU Member States. Solutions for cross-border access could be a general copyright law exception (which is a time-consuming process and therefore less usable in practice in the next 5-10 years), create and build on rightsholder registers with increased collaboration with CMOs, changed management of digital collections (e.g. only digitising orphan works that are in the public domain), or work towards soft legislative solutions (such as an MoU). / <p>Licens: CC BY 4.0</p>

Background: Increasing costs and quantities of orphan drugs within the European market has led to much debate in Sweden on how they should be handled within the existing reimbursement system. Previously, there has been little research looking at local and regional handling of and implications of these issues when it comes to decision-making, financing, and access. This study aims to provide insight into these issues through perspectives and experiences obtained in interviews with representatives working for County Councils in Northern Sweden. Methods: A case study comprised of semi-structured interviews following a qualitative methodology with an inductive approach was used for this study. Five informants from three different work groups engaged with the orphan drug introduction process in Northern Sweden were interviewed. A thematic analysis was performed on the data where common themes were identified through several rounds of coding to allow cross-sectional analysis between data obtained from informants. Results: The thematic analysis identified five major themes surrounding the introduction process for orphan drugs; centralization of processes, methods &amp; standardization, ethical considerations, economics &amp; price setting, and challenges &amp; difficulties. Informants provided insights, opinions, and a deeper understanding of these themes within the introduction process for orphan drugs. Conclusion: This study confirms many of the complexities in establishing a clear and fair process for introducing orphan drugs. In line with existing literature, informants highlighted how centralization and the pooling of resources and expertise is vital in ensuring equal quality and access to care for patients suffering from rare diseases. There is broad agreement how orphan drug legislation and processes should develop, but substantial hurdles concerning the specifics as well as issues with external actors on pricing of orphan drugs. Addressing these issues could potentially have important benefits, not only for healthcare budgets and patients suffering from rare diseases, but also in setting precedents for future processes where costs and ethics will again come to a head.

Based on the premise that only in being accessible can the film reach its potential for history making, the contribution of the film archive to a particular film historical narrative is fragmented: the films that are extant are not necessarily available and the ones that are available are not necessarily publicly accessible. The contention of the thesis is that ‘doing’ film history in the context of the film archive should always be seen in light of an ever increasingly narrowing fragmentation of accessible material that takes place in the film archive. What is new about the contribution of this thesis is not that the film archive can be seen simultaneously as a result of a particular historical narrative as well as contributing to one, but that this debate is put in the context of copyright as a determining factor of why the accessible part of the film archive is only a partial picture. To this end, the thesis proposes a reorganisation of existing categories of analysis in the form of a cross-section of the film archive based on copyright ownership plotted against the material’s ‘availability’. By such practices as using a risk-managed approach to copyright clearance for archival digitisation projects, the film archive can be seen to act as a mediator between copyright and film historiography. On the one hand, the film archive is subjected to copyright law, against the constraints of which it can be seen to resist. On the other hand, the archive makes productive use of copyright in its involvement in the interplay between the ownership of the physical objects and the ability to control the subsequent use and dissemination of those objects. Some of these resistant and productive practices, such as found footage filmmaking as a historiographic intervention and providing access to public domain material, are analysed in the context of some of the digital access practices of EYE Film Institute Netherlands between 2002-2005, in which the film archive can be seen to actively shape access to its film archival holdings as well as a particular potential for film history writing.

The purpose of this study was to explore the lived experiences of African orphaned learners in relation to their educational experiences with the view of establishing whether the type of education received and the inferred quality of that education correlate with official conceptions of quality education as articulated in government policies. The study interrogates policy intentions geared to improving the quality of education in South African schools and juxtaposes the intended policy with the lived experiences of orphaned learners. This is a qualitative case study focusing specifically on four African primary school learners. Data were collected from interviews, observations and written stories of orphaned learners, as well as interviews with the orphaned learners’ teachers and caretakers. The claim I make in this study is that all learners living in impoverished communities and subjected to the kind of disadvantages in operation in their home environment are at risk of education of an inferior quality. However, being an orphan can aggravate this in that orphaned learners bring to school peculiar attributes which would produce outcomes that differ from those envisaged in policy documents. The findings of the study indicate that:<ul><il> (a) the behaviour displayed by orphaned learners, the emotional changes resulting from changing family circumstances, grieving the loss of parents and fear of losing the caregiver may impact negatively on the intended quality of education </il><il> (b) the socioeconomic and cultural contexts of orphaned learners have an influence on the received quality of education</il><il> (c) orphaned learners raised in sibling-headed households, where the primary educators (e.g. parents or surrogate parents) are non-existent, have impoverished educational experiences </il><il> (d) the support provided by the extended family can contribute positively to the educational experiences of orphaned learners </il><il> (e) the community can serve as a critical resource in enhancing the educational experiences of orphaned learners. <br> </ul> Finally, the study indicates that, by studying the lived experiences of African orphans, a better understanding of the quality of education received is made possible and this in turn could influence the conceptualisation of quality education and support structures required to achieve this ideal at higher levels of the education system. / Thesis (PhD)--University of Pretoria, 2010. / Education Management and Policy Studies / unrestricted