The concept of personality rights and their protection, as well as the view on provision of health services has changed a lot. In relation to recent development in the field of private law there is a need to examine the aspects of personality rights separatelyy and also in broughter context. This Master's thesis sets as its goal to follow the current legislation and to point out situations where the personality rights can be especially endangered. The second goal is to evaluate current legal issues in foreign countries of the protection of personality rights in relation to the provision of health services in order to see if there is a probability that Czech law will have to deal with similar problems in the future as well. In the first part the concept of personality rights and their protection is introduced. The aspects related to the provision of health services that may be especially endangered are highlighted. Also the possibilities of resolving situations where there is infringement of personality rights are presented. The second part, which is also the most comprehensive of the thesis, deals with the specific institutes that help the protection of the personality rights in the field of health services. These include primarily informed consent, the way of providing it and the consequences of...

Abstract The present study surveyed medical problems and mental health in an unselected population-based series of people with Down syndrome (DS). All people with DS identified in the Intellectual Disability Service Register in the Kainuu region (n=138) were included, and their health and disability case records in the public services were analysed. The severity of intellectual disability was related to age, gender, and recorded medical problems. Adaptive behaviour changes were assessed among adults repeatedly during ten years using the Adaptive Behaviour Scale - Residential and Community, Part I. The study evaluated health surveillance and practices were compared to the national Current Care guidelines. Numerous medical problems and behavioural symptoms were recorded in this population. Surgical treatments were used extensively. The number of medical problems varied to a great degree among participants. Health problems were extensive from birth to old age. Many health concerns were age-related. The degree of intellectual disability related to visual and neurological impairments. Depression, and among participants in their forties and older, Alzheimer’s disease were the most common underlying reasons for changes in adaptive behaviour. A gradual functional decline and dementia affected many participants at a relatively early age. Visual acuity and hearing should be regularly monitored in all individuals with DS because of a high prevalence of visual impairment and hearing loss in this population. There was a general lack of evidence that the health care guidelines initiated five years ago were being followed. This suggests that possibilities to enhance health have not been optimally implemented. Therefore, further efforts are needed to diagnose and treat medical problems in people with DS. / Tiivistelmä Tutkimuksessa kuvattiin todettujen terveysongelmien yleisyyttä ja terveysseurannasta annettujen suositusten toteutumista Downin oireyhtymässä. Nykyisin Kainuussa elävien Down -henkilöiden tietojen lisäksi alueella aiemmin asuneiden saatavissa olevat sairaus- ja huoltokertomustiedot analysoitiin (n=138). Kehitysvammaisuuden vaikeusasteen, iän, sukupuolen ja todettujen sairauksien yhteyksiä selvitettiin. Aikuisten ja ikääntyvien Down -henkilöiden toimintakykyä seurattiin kymmenen vuoden ajan käyttäen Adaptiivisen käyttäytymisen asteikkoa. Käypä hoito -suosituksen toteutumista terveysseurannan osalta arvioitiin. Down -henkilöillä oli todettu lukuisia terveysongelmia ja käytösoireita kaikissa ikäryhmissä. Kirurgisia hoitoja oli tehty paljon. Yksilölliset erot sairastavuudessa ja toimintakyvyssä olivat erittäin huomattavat. Monet terveysongelmista liittyivät tiettyyn ikään. Vaikeasti kehitysvammaisilla todettiin enemmän silmäsairauksia ja näön ongelmia sekä neurologisia sairauksia kuin lievästi tai keskivaikeasti kehitysvammaisilla. Masennus ja yli 40 vuoden ikäisillä Alzheimerin tauti olivat yleisimmät toimintakyvyn heikentymisen syyt. Toimintakykvyn heikentyminen alkoi usein 40 ikävuoden jälkeen ja moni sairastui suhteellisen nuorena dementiaan. Kaikkien Down -henkilöiden kuuloa ja näköä tulisi seurata säännöllisesti, koska kuulon alentuminen ja näön ongelmat ovat yleisiä ja jäävät usein toteamatta. Hoitosuositukset eivät toteutuneet ainakaan säännöllisen kuulon ja kilpirauhasen toiminnan seurannan osalta viiden vuoden kuluessa suositusten antamisesta. Terveysseurannan parempi toimeenpano terveyden edistämiseksi on mahdollista. Down henkilöiden sairauksien toteamisen ja hoidon kehittäminen vaatii edelleen työtä.

The revolutionary migration within the health care sector towards the digitisation of medical records for convenience or compliance touches on many concerns with respect to ensuring the security of patient personally identifiable information (PII). Foremost of these is that a patient’s right to privacy is not violated. To this end, it is necessary that health care practitioners have a clear understanding of the various constructs of privacy in order to ensure privacy compliance is maintained. This research project focuses on an investigation of privacy from a multidisciplinary philosophical perspective to highlight the constructs of information privacy. These constructs together with a discussion focused on the confidentiality and accessibility of medical records results in the development of an artefact represented in the format of a model. The formulation of the model is accomplished by making use of the Design Science research guidelines for artefact development. Part of the process required that the artefact be refined through the use of an Expert Review Process. This involved an iterative (three phase) process which required (seven) experts from the fields of privacy, information security, and health care to respond to semi-structured questions administered with an interview guide. The data analysis process utilised the ISO/IEC 29100:2011(E) standard on privacy as a means to assign thematic codes to the responses, which were then analysed. The proposed information privacy model was discussed in relation to the compliance requirements of the South African Protection of Personal Information (PoPI) Bill of 2009 and their application in a primary health care facility. The proposed information privacy model provides a holistic view of privacy management that can residually be used to increase awareness associated with the compliance requirements of using patient PII.

This thesis is concerned with electronic prescription of drugs in the Czech republic. The objective is to find a proper standard for electronic medical data exchange and use it for building a new data communication interface for the e-prescription system. This work attends to the evolution and actual situation of the national e-prescription system. The system is based on one central storage for e-prescriptions, however, currently it isn't being used. On basis of valid legislation, electronic prescription and drug dispense processes are analyzed. Furthermore, present central storage data interface is explored. Considering advantages, that are bound to utilization of electronic data exchange standards, main objective of this thesis is given, to design a new interface for transmission of e-prescriptions and drug dispense notifications. New interface shall adhere to standards. Czech standard DASTA and europian norm EN13606 were examined. After all, set of specifications HL7 (Health Level Seven) has been chosen, which suits the requirements best. Data interface design, with HL7 standards, is based on exchange of documents. Documents (prescription, dispense notification) are expressed in the Clinical Document Architecture (CDA) format, and exchanged between applications by means of the Medical Records domain messages. The structure of wrappers, forming a message, results from common HL7 Specification Infrastructure. Presented design has been inspired by Finnish solution eResepti. The design tries to transform present interface of central storage to format, which is defined by selected HL7 specifications. It can be used in both local and central e-prescription systems. It may also support the development of systems for electronic health(care) records exchange.

A disproportion exists between the number of patients in wait list for transplant and the organ procurement, that it can be related to possible flaws in the potential donors identification. To estimate the number of potential organ donors in Sergipe; to characterize the potential donors; to determine the frequency of donation and to know the factors associated to the no donation. Quantitative, descriptive and retrospective study using data collected from the medical records of patients up to 65 years old dead for traumatic brain injury, cerebrovascular stroke and primary brain tumor in the years 2005 to 2007 in three hospitals of Aracaju. Of 766 medical records analyzed, 257 had suggestive registration of brain death, being 148 with the Term of Declaration filled out. Eighty five percent of the potential donors were at the Public Hospital A. The median age was 33 years; prevailing the male (71,6%), the victims of traumatic brain injury (59,5%), and that in Urgency Unit (35,8%) and Intensive Therapy Unit (34,5%). Half of them presented signs of brain death in the first two days of hospitalization. Sixteen (10,8%) potential donors completed all the exams of the protocol of brain death and 12 (8,1%) became effective donors, being the absence of the diagnosis of brain death the principal cause of no donation. The time between the first registration and the removal of the organs was inferior at 40 hours in 50% of the donors. The number of potential organ donors in Sergipe has been underestimated due to flaws in the diagnosis and in the notification, resulting in a low donation index. The rates of family refuse and irreversible cardiac arrest suggest the need of educational actions driven to the health professionals and the society in general. / Existe uma desproporção entre o número de pacientes em lista de espera para transplante e a obtenção de órgãos, que pode estar relacionada a possíveis falhas na identificação dos potenciais doadores. Estimar o número de potenciais doadores de órgãos em Sergipe; caracterizar os potenciais doadores; determinar a freqüência de efetivação de doação e conhecer os fatores associados à não doação. Estudo quantitativo, descritivo e retrospectivo utilizando dados dos prontuários de pacientes até 65 anos de idade que faleceram por traumatismo crânio-encefálico, acidente vascular encefálico e neoplasia primária do sistema nervoso central nos anos 2005 a 2007 em três hospitais de Aracaju. Dos 766 prontuários analisados, 257 tiveram registro sugestivo de morte encefálica, sendo 148 com o Termo de Declaração preenchido. Oitenta e cinco por cento dos potenciais doadores se encontravam no Hospital Público A. A mediana da idade foi de 33 anos, com predomínio do sexo masculino (71,6%). A causa de óbito mais freqüente foi o traumatismo crânio encefálico (59,5%). A maioria encontrava-se internada nas unidades de Urgência (35,8%) e de Terapia Intensiva (34,5%). Metade deles apresentou sinais de morte encefálica nos dois primeiros dias de hospitalização. Dezesseis (10,8%) potenciais doadores completaram todos os exames do protocolo de morte encefálica e 12 (8,1%) se tornaram doadores efetivos, sendo a ausência do diagnóstico da morte encefálica a principal causa da não efetivação da doação. O tempo entre o primeiro registro e a remoção dos órgãos foi inferior a 40 horas em 50% dos doadores. O número de potenciais doadores de órgãos em Sergipe tem sido subestimado devido a falhas no diagnóstico e na notificação, resultando em um baixo índice de doação. As taxas de recusa da família e parada cardíaca irreversível sugerem a necessidade de ações educativas dirigidas aos profissionais de saúde e à sociedade em geral.

Introdução: A utilização das ferramentas e instrumentos da informática no processo do atendimento de pacientes auxilia os profissionais da saúde, pois facilita a coleta e armazenamento das informações, proporcionando qualidade no atendimento e criando condições de enfrentamento dos desafios do mundo globalizado. Nesse contexto, a utilização de dados de prontuário eletrônico de pacientes vinculados à pesquisa clínica em um hospital universitário público pode auxiliar no aprimoramento da assistência à saúde, assim como subsidia dados de pesquisas no âmbito da saúde. Objetivos: Identificar e avaliar os registros provenientes de pesquisas clínicas postos nos sistemas coorporativos do Hospital de Clínicas de Porto Alegre (HCPA), no período de 2014 a 2016. Método: A pesquisa utilizou abordagem quantitativa e qualitativa, de análise de conteúdo de referências e de dados provenientes da rede de informação clínica e assistencial através do cruzamento de informações do sistema integrado Aplicativo para Gestão de Hospitais Universitários (AGHU) e pelo Grupo de Pesquisa e Pós-Graduação (GPPG) do Hospital de Clínicas de Porto Alegre, no período entre janeiro de 2014 e dezembro de 2016. Resultados: Entre os projetos, 58,6% encaminharam relatórios de pesquisa, sendo que somente 23,8% possuem registro de participantes de pesquisa. No entanto, apenas 10,3% dentre todos os estudos que indicaram utilizar pacientes no seu protocolo de pesquisa tem concordância de registro entre o GPPG8 e o AGHU. Cerca de 25,6% do total de relatórios de pesquisa encaminhados apresentam informações quanto aos seus produtos de pesquisa. As pesquisas com patrocínio privado demonstraram encaminhar mais relatórios de atualização dos projetos, porém com menor índice na apresentação dos produtos científicos (1,4%). Considerações finais: Potenciais limitações no uso dos registros existentes no AGHU foram identificadas para decisões terapêuticas pela equipe assistencial de maneira geral, tendo em vista a aparente subnotificação de informações relativas ao andamento e desfecho dos estudos desenvolvidos. Entretanto, não foi possível analisar as causas dos registros possivelmente inadequados ou incompletos, sugerindo-se pesquisas específicas com a incorporação de questionários ou entrevistas individuais para permitir maior aprofundamento na temática. Produtos: A pesquisa identificou a necessidade de três produtos derivados do estudo: (1) material explicativo para os pesquisadores informando a necessidade do registro apropriado dos participantes no sistema coorporativo; (2) modelo de relatório de pesquisa para encerramento de projeto, disponibilizado pelo GPPG, em formato online para pesquisadores responsáveis pelo projeto de pesquisa; e (3) sugestão de melhoria das informações disponibilizadas pela aba “Projetos de Pesquisa” no prontuário online dos pacientes que estão vinculados a projetos de pesquisa, informando os potenciais resultados de pesquisas envolvidas com estes à área assistencial. / Introduction: Using informatics tools on the medical care process for patients helps health professionals, makes easier to collect and to storage information, as well as exchange this information among professionals and institutions, offering quality of care and creating conditions to face challenges in a globalized world. In this context, using electronic medical records data of patients enrolled on clinical trials in a public hospital may help improving health care, as well as provide research health data. Objectives: To identify and evaluate records from clinical trials registered on corporative systems from Hospital de Clinicas de Porto Alegre (HCPA), from 2014 to 2016. Method: The research used quantitative and qualitative approach, analyzing references content and data from the network for clinical data, crossing information from Aplicativo para Gestão de Hospitais Universitários (AGHU) and Grupo de Pesquisa e Pós-Graduação (GPPG) of HCPA, from 2014 and 2016. Results: Among the projects 58,6% forwarded research reports, but just 23,8% with record of research participants. However, only 10,3% of studies that report participants enrolled in study protocol matched records in GPPG8 and AGHU. About 25,6% of total research reports informed research products. Researches with private sponsor showed more update reports, but with lower presentations of scientific products (1,4%). Final considerations: Potential limitations on using existent records on AGHU were identified for therapeutic decisions by clinical team in general, with apparent underreporting of information relate to development and closure for studies developed. However was not possible to analyze causes for possibly inaccurate or incomplete records, suggesting specific research with individual questionnaires or interviews in order to allow deepening the understanding on the theme. Products: The research identify the need for three product from the study: (1) a explicative material to researchers, informing an appropriate participant’s registration on the corporative system; (2) a model of research report for project termination, available on GPPG, online, to lead researchers in research projects; and (3) improvement suggestion on information available by “research projects” tab on the online medical records for patients enroll in research projects, informing potential results associated to medical care area.

No description available.

Senior Health Care System (SHCS) is created for users to enter participants' conditions and store information in a central database. When users are ready for quarterly assessments the system generates a simple summary that can be reviewed, modified, and saved as part of the summary assessments, which are required by Federal and California law.

El presente proyecto propone un Modelo Tecnológico para la Gestión de la Historia clínica entre Entidades Privadas de Salud, soportada por la tecnología blockchain como servicio a través de un proveedor de nube, de modo que se garantiza la seguridad de la información en todo el proceso, con el propósito de mejorar la toma de decisiones en el acto médico. Esto surge debido a que las Entidades de Salud presentan dificultades en integrar la información de historias clínicas de sus pacientes, debido a que cada centro maneja sus propias políticas y estándares de registro. Además, presentan distintos sistemas de información que no se comunican entre sí. Las historias al no ser únicas, no se puede obtener la trazabilidad de la información del paciente, siendo esta vital para el diagnóstico y tratamiento médico adecuado. Las tecnologías de cadena de bloques descentralizan la información de manera segura en una red que puede ser privada, pública o híbrida, almacenan la información de manera cifrada y esta se replica en todos sus pares por lo que es inmutable e incorruptible. De igual manera el uso de la Computación en la Nube refuerza el alcance en la disponibilidad y escalabilidad de recursos a demanda, ofreciendo disponibilidad en cómputo a medida que se requiera. El beneficio de usar estas dos tecnologías en conjunto nos da características adecuadas para el cumplir con los objetivos propuestos del proyecto. Los resultados del proyecto se validaron mediante una prueba de concepto donde se desarrolló un sistema web replicando el proceso de gestión de la historia clínica basada en el modelo tecnológico. Dentro de las pruebas realizadas, se incluyeron factores de éxito para verificar que se cumplan los principios de la seguridad de la información, dentro de estos factores se obtuvo como mínimo un 95% de éxito con respecto a la integridad, confidencialidad y disponibilidad de las historias clínicas. Además, se entrevistó a un experto médico, quien es Director del Centro Médico Naval y Jefe de Departamento de Medicina, quien afirma que el modelo propuesto genera valor al gestionar la historia clínica y respetar las normas técnicas, mejorando notablemente la toma de decisiones médicas. / This project proposes a Technological Model for the Management of the Medical Record between Private Health Entities, supported by blockchain technology as a service through a cloud provider, so that information security is guaranteed throughout the process, with the purpose of improving decision-making in the medical act. This arises because Health Entities have difficulties in integrating the information from their patients' medical records, because each center manages its own registration policies and standards. In addition, present different information systems that do not communicate with each other. The stories not being unique, cannot get the traceability of patient information, this being vital for proper medical diagnosis and treatment. Blockchain technologies decentralize information in a secure way in a network that can be private, public or hybrid, they store the information in an encrypted way and it is replicated in all its peers so it is immutable and incorruptible. In the same way, the use of Cloud Computing reinforces the scope in the availability and scalability of resources on demand, offering availability in computing as required. The benefit of using these two technologies together gives us characteristics suitable for meeting the objectives of the proposed project. The results of the project were validated by a proof of concept where it developed a web system management process replicating the medical history based on technological model. Among the tests performed, success factors were included to ensure that the principles of information security are met within these factors was obtained at least 95% success rate with respect to the integrity, confidentiality and availability of the stories clinics. In addition, a medical expert was interviewed, who is Director of the Naval Medical Center and Head of the Department of Medicine, who affirms that the proposed model generates value by managing the medical history and respecting technical standards, notably improving medical decision-making. / Tesis

Innovative primary care models that deliver comprehensive primary care to address medical and social needs are an established means of improving health outcomes and reducing healthcare costs among persons living with chronic disease. Care management is one such approach that requires providers to monitor their respective patient panels and intervene on patients requiring care. Health information technology (IT) has been established as a critical component of care management and similar care models. While there exist a plethora of health IT systems for facilitating primary care, there is limited research on their ability to support care management and its emphasis on monitoring panels of patients with complex needs. In this dissertation, I advance the understanding of how computational methods can better support clinicians delivering care management, and use the management of human immunodeficiency virus (HIV) as an example scenario of use. The research described herein is segmented into 3 aims; the first was to understand the processes and barriers associated with care management and assess whether existing IT can support clinicians in this domain. The second and third aim focused on informing potential solutions to the technological shortcomings identified in the first aim. In the studies of the first aim, I conducted interviews and observations in two HIV primary care programs and analyzed the data generated to create a conceptual framework of population monitoring and identify challenges faced by clinicians in delivering care management. In the studies of the second aim, I used computational methods to advance the science of extracting from the patient record social and behavioral determinants of health (SBDH), which are not easily accessible to clinicians and represent an important barrier to care management. In the third aim, I conducted a controlled experimental evaluation to assess whether data visualization can improve clinician’s ability to maintain awareness of their patient panels.