La question de la protection et de la valorisation des données de santé fait l’objet d’un renouvellement permanent car elle est tiraillée pas des intérêts contradictoires. Les logiques juridiques, sanitaires et économiques s’affrontent et s’expriment au travers d’une règlementation particulièrement fournie et disparate des données de santé. Le droit de propriété semble à même de concilier ces enjeux d’apparence antinomiques. Au regard de la place de ce droit dans notre ordonnancement juridique et de la singularité des données de santé, l’étude de leur rapprochement mérite une étude d’une certaine ampleur. Il s’agit dans un premier temps de s’assurer de la compatibilité de ce droit avec les données de santé. La réponse impose une vision de la propriété simplifiée pour finalement constater que les droits existants sur ces données sont en fait déjà des droits de propriétés mais qui, du fait de la particularité des données de santé, sont largement limités. Dans un second temps, se pose donc la question de la pertinence de l’application d’un droit de propriété plus « complet » aux données de santé. Or, on remarque que la spécificité de ces données est telle que cette solution n’est pas la plus efficace pour parvenir à un juste équilibre entre patients et collecteurs de données. Pour autant, d’autres solutions sont possibles. / The question of the protection and enhancement of health data is subject to a permanent renewal because it appears to be in the middle of some conflicting interests. Legal, health and economic logics confront and express themselves through a particularly heterogenous set of regulations on health data. Property rights here seem able to reconcile these issues that first look contradictory appearance issues. Given the place of this right in our legal system and uniqueness of health data, the study of their reconciliation deserves a study of some magnitude. This is a first step to ensure the compatibility of this law with health data. The answer requires a vision of simplified property only to find that the existing rights of the data is already in the property rights but which, because of the particularity of health data, are largely limited. Secondly, therefore the question of the relevance of the application of "more complete" property rights applies to health data. However, we note that the specificity of health data implies that such a the solution is not the most effective for achieving a fair balance between patients and data collectors. Nevertheless, other solutions are possible.

Healthcare systems have assimilated information and communication technologies in order to improve the quality of healthcare and patient's experience at reduced costs. The increasing digitalization of people's health information raises however new threats regarding information security and privacy. Accidental or deliberate data breaches of health data may lead to societal pressures, embarrassment and discrimination. Information security and privacy are paramount to achieve high quality healthcare services, and further, to not harm individuals when providing care. With that in mind, we give special attention to the category of Mobile Health (mHealth) systems. That is, the use of mobile devices (e.g., mobile phones, sensors, PDAs) to support medical and public health. Such systems, have been particularly successful in developing countries, taking advantage of the flourishing mobile market and the need to expand the coverage of primary healthcare programs. Many mHealth initiatives, however, fail to address security and privacy issues. This, coupled with the lack of specific legislation for privacy and data protection in these countries, increases the risk of harm to individuals. The overall objective of this thesis is to enhance knowledge regarding the design of security and privacy technologies for mHealth systems. In particular, we deal with mHealth Data Collection Systems (MDCSs), which consists of mobile devices for collecting and reporting health-related data, replacing paper-based approaches for health surveys and surveillance. This thesis consists of publications contributing to mHealth security and privacy in various ways: with a comprehensive literature review about mHealth in Brazil; with the design of a security framework for MDCSs (SecourHealth); with the design of a MDCS (GeoHealth); with the design of Privacy Impact Assessment template for MDCSs; and with the study of ontology-based obfuscation and anonymisation functions for health data. / Information security and privacy are paramount to achieve high quality healthcare services, and further, to not harm individuals when providing care. With that in mind, we give special attention to the category of Mobile Health (mHealth) systems. That is, the use of mobile devices (e.g., mobile phones, sensors, PDAs) to support medical and public health. Such systems, have been particularly successful in developing countries, taking advantage of the flourishing mobile market and the need to expand the coverage of primary healthcare programs. Many mHealth initiatives, however, fail to address security and privacy issues. This, coupled with the lack of specific legislation for privacy and data protection in these countries, increases the risk of harm to individuals. The overall objective of this thesis is to enhance knowledge regarding the design of security and privacy technologies for mHealth systems. In particular, we deal with mHealth Data Collection Systems (MDCSs), which consists of mobile devices for collecting and reporting health-related data, replacing paper-based approaches for health surveys and surveillance.

No abstract available.

A heterogeneidade é inerente as metrópoles cujos territórios são fragmentados por diversas desigualdades socioespaciais. No caso do Rio de Janeiro, as singularidades históricas da formação social e urbana da Cidade desencadearam um modelo de segregação socioespacial onde há forte proximidade territorial entre as favelas e os bairros que formam as áreas superiores da cidade, fracassando, assim, a estratificação socioespacial do tipo centro-periferia. Para a identificação dos múltiplos territórios intraurbanos, objetos do planejamento em saúde, fica clara a crescente necessidade de produção, organização e atualização de informações mais detalhadas e desagregadas espacialmente. Esta dissertação explora as potencialidades da tecnologia de geoprocessamento na delimitação de espaços-população prioritários de atuação de políticas públicas em saúde na Cidade, a partir da espacialização de indicadores socioeconômicos e de saúde na menor unidade de análise geográfica. O estudo possibilitou verificar que a tecnologia espacial de análise de dados foi efetiva na identificação de desigualdades socioterritoriais, o que permite a gestão reagregar unidades espaciais mais homogêneas e reconstruir suas áreas de planejamento em saúde. Com relação à espacialização de dados de saúde, a tecnologia esbarrou em problemas quanto à qualidade dos dados de endereço coletados no sistema de informação hospitalar e na ausência de atualização de dados cartográficos digitais. A tecnologia de geoprocessamento, na área da saúde, apesar da disponibilidade de bases de dados, de programas livres disponíveis e da existência de pessoal capacitado, vem apresentando sua utilização limitada pelos problemas verificados. Recomendam-se esforços de investimentos na padronização da entrada de endereços nos sistemas de informação em saúde, na atualização do cadastro de endereços do município e no desenvolvimento tecnológico dos programas de georreferenciamento para relacionar as bases de dados, levando em consideração possíveis diferenças de grafia de ruas / The heterogeneity is inherent in the metropolitan which areas are fragmented by several spatial inequalities. In Rio de Janeiro, the unique historical and social formation of the urban model unleashed a spatial segregation of strong territorial proximity between the towns and neighborhoods that make up the upper areas of the city, failing, then, the stratification of socio - type center-periphery. For the identification of multiple urban territory, objects of health planning, it is clear the increasing need for production and update more detailed and disaggregated spatially information. This dissertation explores the potential of GIS technology in the definition of "space-population" areas of activity of public health policies in the City, from the spatial distribution of socioeconomic indicators and health in the smallest unit of geographic analysis. The study enabled us to verify that space technology for data analysis was effective in identifying inequalities socioterritoriais, which allows the management re-aggregates more homogeneous spatial units and rebuild their areas of health planning. With respect to spatial health data, the technology ran into problems with the quality of address data collected in the hospital information system and in the absence of updating digital map data. The technology of GIS, in health, despite the availability of databases of free programs available and the availability of trained personnel, has been showing its use limited by problems encountered. Recommend investments to the standardization efforts of the entry of addresses in information systems in health, in the update of mailing of the municipality and technological development programs relate to georeferencing databases, taking into account possible differences in spelling of streets

Thesis (MTech (Information Technology))--Cape Peninsula University of Technology, 2016. / Health information policies are constantly becoming a key feature in directing information usage in healthcare. After the passing of the Health Information Technology for Economic and Clinical Health (HITECH) Act in 2009 and the Affordable Care Act (ACA) passed in 2010, in the United States, there has been an increase in health systems innovations. Coupling this health systems hype is the current buzz concept in Information Technology, „Big data‟. The prospects of big data are full of potential, even more so in the healthcare field where the accuracy of data is life critical. How big health data can be used to achieve improved health is now the goal of the current health informatics practitioner. Even more exciting is the amount of health data being generated by patients via personal handheld devices and other forms of technology that exclude the healthcare practitioner. This patient-generated data is also known as Personal Health Records, PHR. To achieve meaningful use of PHRs and healthcare data in general through big data, a couple of hurdles have to be overcome. First and foremost is the issue of privacy and confidentiality of the patients whose data is in concern. Secondly is the perceived trustworthiness of PHRs by healthcare practitioners. Other issues to take into context are data rights and ownership, data suppression, IP protection, data anonymisation and reidentification, information flow and regulations as well as consent biases. This study sought to understand the role of data policies in the process of data utilisation in the healthcare sector with added interest on PHRs utilisation as part of big health data.

A heterogeneidade é inerente as metrópoles cujos territórios são fragmentados por diversas desigualdades socioespaciais. No caso do Rio de Janeiro, as singularidades históricas da formação social e urbana da Cidade desencadearam um modelo de segregação socioespacial onde há forte proximidade territorial entre as favelas e os bairros que formam as áreas superiores da cidade, fracassando, assim, a estratificação socioespacial do tipo centro-periferia. Para a identificação dos múltiplos territórios intraurbanos, objetos do planejamento em saúde, fica clara a crescente necessidade de produção, organização e atualização de informações mais detalhadas e desagregadas espacialmente. Esta dissertação explora as potencialidades da tecnologia de geoprocessamento na delimitação de espaços-população prioritários de atuação de políticas públicas em saúde na Cidade, a partir da espacialização de indicadores socioeconômicos e de saúde na menor unidade de análise geográfica. O estudo possibilitou verificar que a tecnologia espacial de análise de dados foi efetiva na identificação de desigualdades socioterritoriais, o que permite a gestão reagregar unidades espaciais mais homogêneas e reconstruir suas áreas de planejamento em saúde. Com relação à espacialização de dados de saúde, a tecnologia esbarrou em problemas quanto à qualidade dos dados de endereço coletados no sistema de informação hospitalar e na ausência de atualização de dados cartográficos digitais. A tecnologia de geoprocessamento, na área da saúde, apesar da disponibilidade de bases de dados, de programas livres disponíveis e da existência de pessoal capacitado, vem apresentando sua utilização limitada pelos problemas verificados. Recomendam-se esforços de investimentos na padronização da entrada de endereços nos sistemas de informação em saúde, na atualização do cadastro de endereços do município e no desenvolvimento tecnológico dos programas de georreferenciamento para relacionar as bases de dados, levando em consideração possíveis diferenças de grafia de ruas / The heterogeneity is inherent in the metropolitan which areas are fragmented by several spatial inequalities. In Rio de Janeiro, the unique historical and social formation of the urban model unleashed a spatial segregation of strong territorial proximity between the towns and neighborhoods that make up the upper areas of the city, failing, then, the stratification of socio - type center-periphery. For the identification of multiple urban territory, objects of health planning, it is clear the increasing need for production and update more detailed and disaggregated spatially information. This dissertation explores the potential of GIS technology in the definition of "space-population" areas of activity of public health policies in the City, from the spatial distribution of socioeconomic indicators and health in the smallest unit of geographic analysis. The study enabled us to verify that space technology for data analysis was effective in identifying inequalities socioterritoriais, which allows the management re-aggregates more homogeneous spatial units and rebuild their areas of health planning. With respect to spatial health data, the technology ran into problems with the quality of address data collected in the hospital information system and in the absence of updating digital map data. The technology of GIS, in health, despite the availability of databases of free programs available and the availability of trained personnel, has been showing its use limited by problems encountered. Recommend investments to the standardization efforts of the entry of addresses in information systems in health, in the update of mailing of the municipality and technological development programs relate to georeferencing databases, taking into account possible differences in spelling of streets

L’évolution du secret médical vers un secret professionnel concernant de nombreuses professions soulève la question de la transmission des données personnelles de santé. Étudiant les fondements juridiques de cette transmission et s’appuyant sur des exemples pratiques relevés au cours de l’activité des praticiens conseils au sein de l’assurance maladie, ce travail développe les droits de l’individu sur la maîtrise du secret et les possibilités de transmissions des données dans le respect du droit des autres personnes que sont les ayants droits et les employeurs comme les droits de la défense. La possibilité d’une prédominance de la société sur la personne est envisagée dans le cadre de la protection de la santé, de la justice et de la gestion économique des dépenses de santé.Des propositions d’évolution des pratiques et de la législation visent à permettre l’encadrement des transmissions des données personnelles de santé dans le respect des droits des personnes. / Medical secrecy is moving towards a professional secrecy, which concerns numerous professions, raising the question of transmission of personnel health data.This thesis, based on practical examples taken from professional activities of practitioners advisers in the Health insurance, studies legal foundations of this transmission and develops individual rights on how to control secrecy and possibilities of transmission of data according to the respect of the rights of other people such as eligible parties and employers. The fact that a society can be more prominent than a person is contemplated in the context of health protection, justice and economic management of health spending.Evolutions of practices and legislation are suggested and aim at allowing the supervision of transmission of personal health data according to people’s rights.

No description available.

La sclérose en plaques (SEP) est une maladie neurologique chronique du jeune adulte affectant environ 100 000 personnes en France. Au cours des deux dernières décennies, les stratégies thérapeutiques ont fortement évolué avec l’apparition de nouvelles molécules dont les premières formes orales. Le parcours de soins dans la SEP implique plusieurs professionnels de santé médicaux (généralistes, neurologues) et paramédicaux (kinésithérapeutes, infirmiers). Actuellement, aucune recommandation sur ces parcours n’a été définie, et peu de données existent sur le recours aux soins des individus ayant une SEP et l’utilisation des traitements spécifiques à la SEP en France. L’utilisation des données du Système National des Données de Santé (SNDS), c’est-à-dire les bases de l'Assurance Maladie, couplée avec les méthodes d’analyse de séquences donne l’opportunité d’étudier ces parcours de soins. L’objectif principal de cette thèse était d’étudier les parcours de soins des personnes ayant une SEP en France, à partir du SNDS, afin de décrire les consommations de soins et de mettre en évidence une typologie de parcours. Les objectifs secondaires étaient d’étudier l’utilisation des traitements de fond de la SEP en France (fréquence et place dans la séquence thérapeutique), et d’étudier la faisabilité de mesurer le niveau de handicap moteur dans ces bases. Au total sur la période de suivi de 2010 à 2015, 112 745 patients ont été identifiés, dont 47,4% avaient reçu au moins une délivrance d’un traitement de fond spécifique à la SEP. Une typologie a été obtenue identifiant cinq groupes cliniquement distincts. En parallèle, un indicateur de quantification du niveau de handicap moteur, pouvant être répliqué dans d’autres études, a été proposé afin d’enrichir les données du SNDS. Au travers des différentes analyses réalisées et des questions méthodologiques soulevées, des éléments clés permettant l’utilisation des méthodes d’analyse de séquences en santé, notamment la multichannel sequence analysis, ont pu être mis en évidence. / Multiple sclerosis (MS) is a chronic neurological disease starting in young adulthood and affecting about 100,000 persons in France. During the last two decades, therapeutic practices have evolved with the release of new substances, especially oral disease-modifying therapies (DMTs). Care pathways in MS involve both medical (general practitioners, neurologists) and paramedical (physiotherapists and nurses) health care professionals. However, no recommendation on care pathways in MS exists so far in France. Moreover, few data are available on care-seeking of persons with MS (PwMS) and the utilization of DMTs in France. The use of state sequence analysis (SSA) on data issued from the French National Health Data System (SNDS, i.e. databases from the French Health Insurance System) offers the opportunity to study care pathways. The main objective of this PhD thesis was to study the care pathways of PwMS in France using data from SNDS, in order to describe care-seeking and to create a typology of pathways. The secondary objectives were to study MS DMTs utilization in France (frequency and therapeutic sequences), and the feasibility to measure the level of motor disability in SNDS. Over the 2010-2015 study period, 112,745 PwMS were identified. Amongst them, 47.4% had at least one delivery of a MS-specific DMT. A typology was obtained allowing the identification of five clinically distinct groups of patients. In parallel, a parameter quantifying the level of motor disability in SNDS, which could be replicated in other studies, was defined. Thanks to the different analyses and raised methodological questions, key-elements allowing the use of SSA in health field, especially multichannel sequence analysis, were highlighted.

Kroniskt sjuka tar idag flera beslut om hur de på egen hand ska behandla sin sjukdom, genommediciner, kost och träning. Tidigare forskning visar att det finns ett samband mellan kronisktsjuka och låg hälsolitteracitet. Definitionen av hälsolitteracitet är förmågan att tolka text,dokument och nummer som står i samband med varandra, samt förmågan att fungera isjukvården (Baker, 2006). Personer med kroniska sjukdomar har sämre kunskap om sittsjukdomstillstånd och tillgängliga behandlingar, vilket leder till sämre hälsoutkomster.Kroniskt sjuka har god tillgänglighet att utföra medicinska mätningar i hemmet, vilket ledertill en mer förståelse för sin egna sjukdom och bättre hälsoutkomst. Omfattande mängderlångtidsdata sparas idag inom vården, vilket har gjort data mer komplex. För att kunna tolkaoch förstå datan behövs det ett sätt att visualisera hälsodata på, så att det kan omvandlas tillinsikter och ny kunskap. Ett område som skulle kunna möta utmaningarna inom visualiseringav hälsodata är spelvisualisering. Syftet med studien var att undersöka om kunskap omvisualisering som tidigare enbart används i speldesign kan placeras på hälsodata och såledesstötta hälsolitteraciteten hos kroniskt sjuka. Studien har tillämpat en designforskingsansats,där designriktlinjer för visualisering inom spel implementerades i en prototyp, för att kunnaidentifiera hur hälsodata lämpligast kan visualiseras. Studien resulterade i fem designförslagför hur hälsodata kan visualiseras för att stötta hälsolitteracitet. / Today, chronically ill make several decisions about how to treat their medical condition through medication, diet and exercise. Previous research shows that there is a connection between chronical illness and low health literacy. The definition of health literacy is the ability to interpret text, document and numeracy that are interrelated, as well as the ability to function in the health care system (Baker, 2006). People with a chronical illness have inferior knowledge about their health and available treatments, leading to poor health outcomes. Chronically ill people have good accessibility to perform medical measurements at home, which leads to a greater understanding of their own illness, and better health outcomes. Large amounts of long-term healthdata is today stored in the health care system, which has made the data more complex. To be able to interpret and understand this data there is a need to visualize health data in a way that it can be transformed into insights and new knowledge. One area that could possibly meet the challenges of visualizing health data is game visualization. The purpose of the study was to investigate if common game visualization patterns can be effectively applied to health dataand thus support the health literacy of people with a chronicall illness. This was accomplished through a design research approach, where design guidelines for visualization in games were implemented in a prototype. It was done to identify how health datacan best be visualized. The study resulted in five design suggestions for how health data can be visualized to support health literacy.