Our ultimate goal as obstetric and neonatal care providers is to improve care for mothers and their babies. Continuous quality improvement (CQI) involves iterative cycles of practice change and audit of ongoing clinical care identifying practices that are associated with good outcomes. A vital prerequisite to this evidence based medicine is data collection. In Canada, much of the country is covered by separate fragmented silos known as regional reproductive care databases or perinatal health programs. A more centralized system which includes collaborative efforts is required. Moving in this direction would serve many purposes: efficiency, economy in the setting of limited resources and shrinking budgets and lastly, interaction among data collection agencies. This interaction may facilitate translation and transfer of knowledge to care-givers and patients. There are however many barriers towards such collaborative efforts including privacy, ownership and the standardization of both digital technologies and semantics. After thoroughly examining the current existing perinatal data collection among Perinatal Health Programs (PHPs), and the Canadian Perinatal Network (CPN) database, it was evident that there is little standardization of definitions. This serves as one of the most important barriers towards data sharing. To communicate effectively and share data, researchers and clinicians alike must construct a common perinatal language. Communicative tools and programs such as SNOMED CT® offer a potential solution, but still require much work due to their infancy. A standardized perinatal language would not only lay the definitional foundation in women’s health and obstetrics but also serve as a major contribution towards a universal electronic health record.

This paper describes Inuit cultural considerations when defining and communicating electronic health concepts and personal health information services to urban Inuit audiences. Applying a two-eyed seeing model to build on and describe contextual meanings for Western and Inuit versions of health information and information communication technologies is critical to sustained relevance of electronic health information. Overarching concerns include reclaiming Inuit ownership and vision; sustainability; and; authority and capacity. It is within an electronic health space that Inuit can attain self-determination for the management of their own personal health data and develop a set of culturally safe and empowering practices for communicating ownership and cultural relevancy of health and health information in an evolving health care system.

Orientadores: Ivan Luiz Marques Ricarte, Maria Cristiane Barbosa Galvão / Dissertação (mestrado) - Universidade Estadual de Campinas, Faculdade de Engenharia Elétrica e de Computação / Made available in DSpace on 2018-08-26T07:52:51Z (GMT). No. of bitstreams: 1 Piconi_AndressaCristiani_M.pdf: 1915313 bytes, checksum: 8c75fc45b07dd43aba52a24a307e8bed (MD5) Previous issue date: 2014 / Resumo: Os prontuários eletrônicos do paciente (PEP) são mais do que um repositório de informações e provas relativas à assistência em saúde, são fontes de informação para a pesquisa, para a gestão e para a memória da sociedade. Considerados documentos arquivísticos digitais, a preservação desta informação, produzida e mantida por instituições de saúde ao longo do tempo, é fundamental para garantir a qualidade da assistência, da eficiência em diagnósticos e tratamentos e dos direitos dos pacientes. Dentre os mecanismos tecnológicos existentes para apoiar a preservação de documentos em meio digital ao longo do tempo está o da associação de metadados, desde o momento de sua produção até sua destinação final. É de fundamental importância que instituições produtoras e detentoras de documentos digitais de caráter arquivístico determinem estratégias consolida-das de preservação digital, atendendo à adoção de métodos e tecnologias que integrem a preservação física, lógica e conceitual dos documentos digitais, utilizando-se dos metadados como in-sumo primordial para o desenvolvimento dessas estratégias. O presente trabalho tem como objetivo responder a seguinte questão de pesquisa: quais são os metadados necessários para assegurar a preservação digital de prontuários eletrônicos do paciente, pelo tempo que for necessário, e como esses metadados podem ser organizados em uma ontologia? A partir de uma revisão de literatura foi definido um conjunto de metadados visando à preservação dos documentos (que pode ser aplicado tanto para os natos digitais quanto para os digitalizados) que compõem os PEPs, utilizando como modelo o Clinical Document Architecture (CDA) e os metadados do e-ARQ Brasil: Modelo de Requisitos para Sistemas Informatizados de Gestão Arquivística de Documentos. Uma ontologia foi proposta para formalizar esses conceitos e cenários hipotéticos foram elaborados para sua validação, representando os principais aspectos associados à definição de metadados para a preservação de documentos clínicos, buscando relacionar assim as áreas de Engenharia da Computação, de Arquivologia e da Saúde. Essa ontologia poderá ser utilizada por desenvolvedores para estabelecer e avaliar a presença de metadados e estratégias de preservação nos PEPs produzidos e gerenciados por sistemas de saúde. Além disso, poderá também orientar gestores e responsáveis pelo estabelecimento de políticas para a definição de normas e procedimentos específicos para a preservação de PEPs / Abstract: Electronic Health Records (EHR) are more than a repository of information and evidence related to health care, they are sources of information for research, for management and for the memory of society. Considered digital records, preservation of this information, produced and maintained by health institutions over time, is critical to ensure the quality of assistance and efficiency in diagnosis and treatment and patients' rights. Among the existing support for the preservation of documents in digital media over time technological mechanisms is the association of metadata from the time of its production until its final destination. It is vital that institutions produce and hold the digital archival records character consolidates determine strategies for digital preservation, given the adoption of methods and technologies that integrate the physical, logical and conceptual preservation of digital records, using metadata as a key for the development of these strategies. This paper aims to answer the following research question: what are the metadata required to ensure the digital preservation of electronic health records, for as long as necessary, and how these metadata can be organized into an ontology? From a literature review was defined a set of metadata aiming at the preservation of the documents (which can be applied to both born digital and digitized for) that make up the EHRs, using as a model the Clinical Document Architecture (CDA) and metadata of e-ARQ-Brasil: Model Requirements for Computerized Systems Archiving Document Management. An ontology is proposed to formalize these concepts and hypothetical scenarios were developed to validate it, representing the major aspects associated with the metadata definition for the preservation of clinical documents, seeking related the areas of Computer Engineering, Archivology and Health . This ontology can be used by developers to establish and evaluate the presence of metadata and preservation strategies for EHRs produced and managed by systems. It also can guide managers and responsible for establishing policies for the definition of specific rules and procedures for the preservation of EHRs / Mestrado / Engenharia de Computação / Mestra em Engenharia Elétrica

Our ultimate goal as obstetric and neonatal care providers is to improve care for mothers and their babies. Continuous quality improvement (CQI) involves iterative cycles of practice change and audit of ongoing clinical care identifying practices that are associated with good outcomes. A vital prerequisite to this evidence based medicine is data collection. In Canada, much of the country is covered by separate fragmented silos known as regional reproductive care databases or perinatal health programs. A more centralized system which includes collaborative efforts is required. Moving in this direction would serve many purposes: efficiency, economy in the setting of limited resources and shrinking budgets and lastly, interaction among data collection agencies. This interaction may facilitate translation and transfer of knowledge to care-givers and patients. There are however many barriers towards such collaborative efforts including privacy, ownership and the standardization of both digital technologies and semantics. After thoroughly examining the current existing perinatal data collection among Perinatal Health Programs (PHPs), and the Canadian Perinatal Network (CPN) database, it was evident that there is little standardization of definitions. This serves as one of the most important barriers towards data sharing. To communicate effectively and share data, researchers and clinicians alike must construct a common perinatal language. Communicative tools and programs such as SNOMED CT® offer a potential solution, but still require much work due to their infancy. A standardized perinatal language would not only lay the definitional foundation in women’s health and obstetrics but also serve as a major contribution towards a universal electronic health record. / Medicine, Faculty of / Obstetrics and Gynaecology, Department of / Graduate

The landscape of the United States public school system was greatly improved upon with the creation of The Individuals with Disabilities Education Act of 2004 (IDEA 2004). This act established a standard that allowed all school aged children living with chronic illnesses to integrate into public school systems. This mandate currently impacts over 12 million children living with chronic illness including and not limited to asthma, seizure disorders, developmental delay, cystic fibrosis, traumatic brain injuries, anxiety and cancer. IDEA 2004 extended healthcare into public school systems and as a result, increased the average acuity of students that school nurses (SNs) care for. It is estimated that 15% of school-aged children miss 11 or more school days per year because of illness or injury demonstrating evidence of increased student acuity and a need to provide more appropriate care for these students in order to increase their time spent in the academic setting. Adequate SN and primary care provider (PCP) communication is essential to reduce absenteeism for this population and to ensure that students are safe during their time spent away from home and healthcare clinics. From this quality improvement project, more is understood pertaining to the communication patterns between SNs and PCPs and recommendations are provided in order to increase effective SN and PCP communication.

With the fast development of information technology, traditional healthcare is evolving to a more digital and electronic stage. Electronic HealthRecord (EHR) is residents’ basic information and health care relatedinformation conforming to standard. It can not only provide usefulinformation to medical workers, but also exchange resources with otherinformation systems. But with the growing complexity of electronichealth record data sources, it becomes a big challenge to set up a structurewhich allows different types of data sharing and exchanging inmulti-platform applications. It’s even more important to find out amethod to support great amount of users from different applicationplatform to sharing and exchanging data at the same time.In this paper, we proposed a distributed electronic health record systembased on middleware to address the problem. Both permanent and realtimedata should pass through the middleware provided by the system,and will be transformed into standard format for storage. Multi-threadand distributed server group design will let the system be more flexibleand scalable, and will be able to provide service to users concurrently.The system creates a standard data format for data transferring andstorage. All raw data collected from different kinds of sensor system willbe formatted with application programming interface (API) or softwaredevelopment kit (SDK) system provided before upload to the system.Encryption methods are also implemented to ensure data security andprivacy protection.

abstract: Blockchain technology enables a distributed and decentralized environment without any central authority. Healthcare is one industry in which blockchain is expected to have significant impacts. In recent years, the Healthcare Information Exchange(HIE) has been shown to benefit the healthcare industry remarkably. It has been shown that blockchain could help to improve multiple aspects of the HIE system. When Blockchain technology meets HIE, there are only a few proposed systems and they all suffer from the following two problems. First, the existing systems are not patient-centric in terms of data governance. Patients do not own their data and have no direct control over it. Second, there is no defined protocol among different systems on how to share sensitive data. To address the issues mentioned above, this paper proposes MedFabric4Me, a blockchain-based platform for HIE. MedFabric4Me is a patient-centric system where patients own their healthcare data and share on a need-to-know basis. First, analyzed the requirements for a patient-centric system which ensures tamper-proof sharing of data among participants. Based on the analysis, a Merkle root based mechanism is created to ensure that data has not tampered. Second, a distributed Proxy re-encryption system is used for secure encryption of data during storage and sharing of records. Third, combining off-chain storage and on-chain access management for both authenticability and privacy. MedFabric4Me is a two-pronged solution platform, composed of on-chain and off-chain components. The on-chain solution is implemented on the secure network of Hyperledger Fabric(HLF) while the off-chain solution uses Interplanetary File System(IPFS) to store data securely. Ethereum based Nucypher, a proxy re-encryption network provides cryptographic access controls to actors for encrypted data sharing. To demonstrate the practicality and scalability, a prototype solution of MedFabric4Me is implemented and evaluated the performance measure of the system against an already implemented HIE. Results show that decentralization technology like blockchain could help to mitigate some issues that HIE faces today, like transparency for patients, slow emergency response, and better access control. Finally, this research concluded with the benefits and shortcomings of MedFabric4Me with some directions and work that could benefit MedFabric4Me in terms of operation and performance. / Dissertation/Thesis / Masters Thesis Computer Engineering 2020

This thesis is devoted to general practice (GP) networks in Belgium, their development and their activities within the Belgian health system context. These networks are specific research tools for the repeated or continuous collection and analysis of data related to diseases and other health events observed in general practice, including interventions of general practitioners. The thesis focuses on three not-for-profit general practice research networks which are operational today: (1) the national Network of Sentinel General Practices (SGP), coordinated by the Federal research institute Sciensano; (2) the Flemish Intego network, coordinated by the Academic Center for General Practice of Catholic University Leuven; (3) the network of the Fédération des maisons médicales et des collectifs de santé francophones (FMM) with its Monitoring Chart (Tableau de bord), which collects data from Wallonia and the Brussels-Capital Region. The thesis is divided into a general introduction, three main parts and a final discussion with concluding remarks. The general introduction outlines the importance of data from general practice and the contribution of GP networks to research. Furthermore, it points out the importance of general practice for the control of sexually transmitted infections (STIs), a specific field of action. The first main part of the thesis investigates the research question of how the three GP research networks developed within the specific context of the Belgian health system. It is based on the interpretation of written sources such as project reports, annual network reports, research publications, parliamentary documents, relevant websites and the existing research literature. The context analysis included a comparison with the Netherlands since the latter have strong traditions with regard to the position of the general practitioner in the health system (gatekeeper to secondary care, whereas in Belgium the patient generally chooses his/her health provider, and a Global Medical File administered by the general practitioner is not mandatory in Belgium), to general practice research networks and computerisation. It could be shown (1) that Belgium has held a middle position in the European Union regarding GP computerisation; (2) that, contrary to the Netherlands, an operational national GP network based on data from electronic health records (EHRs) could not be established; and (3) that Belgian health system computerisation, which advanced substantially in the last decade, put the issue of health data collection and storage by a new digital service on the agenda. Subsequently, three sub-chapters focus on the development of the three GP networks from their foundation until today. They demonstrate that the SGP and Intego were founded as innovative tools originating from Flemish general practice research, whereas the Monitoring Chart originated from the dynamism of Integrated Primary Health Care Centres (IPHCCs, Maisons médicales) in French-speaking Belgium. Acting as health observatories was both part of the mission of the IPHCCs and the demand of the Regional governments. With time, the research designs of the three GP networks became more sophisticated. Furthermore, European cooperation of the SGP with other GP networks since the late 1980s stands out, since the vision to establish a European sentinel general practice network led to joint influenza surveillance as one of its lasting achievements. In continuation of the developments described above, the second main part of the thesis addresses the missions and the organisation of the three GP networks today as well as their respective strengths and limitations in comparative perspective. It is based on network publications and reports, relevant websites and informal information from the networks themselves. The comparison shows that there is little overlap between the activities of the three GP networks, given the different areas of investigation and the complementarity of supplementary information collected by the SGP versus routine data extraction from EHRs in the other two networks. Furthermore, Intego and the Monitoring Chart essentially cover different parts of the country. The prospective research design of the SGP allows formulating hypotheses and designing research questionnaires with precise definitions of diagnoses before the start of a new research topic in order to minimise inter-observer variability, whereas the diagnosis in the other two networks is the result of the general practitioner's clinical judgement. The Intego network disposes of a substantial number of routine parameters collected over more than two decades by now. With these data, the researchers can design retrospective cohort studies without recording or recall bias by the GP who does not know during his/her daily routine for which research questions his/her data may be used later. The Monitoring Chart stands out by its comparatively strong presence in the Brussels-Capital Region and its data from the less well-to-do part of the population. The third main part of the thesis focuses on STIs which provided a research opportunity, given that Belgian public health efforts to control them have increased in recent years and that the three GP networks engaged in research activities in this regard. The first sub-chapter addresses challenges for the surveillance and monitoring of STIs due to the nature of the pathogens, followed by a sub-chapter about characteristics of STI surveillance and monitoring in Belgium. Afterwards, a sub-chapter describes health policy efforts in order to establish the Belgian HIV Plan 2014-2019. The development of the HIV Plan was analysed by applying the policy streams model of John Kingdon. The analysis was based on published government statements, parliamentary documents, and websites of stakeholders, and showed that the Federal Ministry of Health initiative to achieve the HIV Plan was characterised by a coordinating role with a participatory approach towards the other Belgian governments and stakeholders. The 2013 protocol agreement of the Belgian governments committed them to principles, actions, and cooperation regarding HIV prevention, testing, treatment of persons living with HIV and care for their quality of life, but not to budgets, priorities or target figures. The implementation of the plan, highlighting aspects relating to general practice, is addressed in the subsequent sub-chapter. Two further sub-chapters are based on the analysis of retrospective cohort studies with Intego data from 2009 to 2013, based on EHR routine registration by over 90 general practitioners in Flanders. In the first sub-chapter, the frequencies of gonorrhoea and syphilis diagnoses were investigated. Case definitions were applied. Due to small case numbers obtained, cases were pooled and averaged over the observation period. Frequencies were compared with those calculated from mandatory notification. A total of 91 gonorrhoea and 23 syphilis cases were registered. The average Intego annual frequency of gonorrhoea cases obtained was 11.9 (95% Poisson confidence interval (CI) 9.6; 14.7) per 100,000 population, and for syphilis 3.0 (CI 1.9; 4.5), respectively, while mandatory notification was calculated at 14.0 (CI: 13.6, 14.4) and 7.0 (CI: 6.7, 7.3), respectively. In spite of limitations such as small numbers and different case definitions, the data suggests that the general practitioner was involved in the large majority of gonorrhoea cases, while the majority of new syphilis cases did not come to the knowledge of the general practitioner. The second sub-chapter deals with the prescription of antibiotics to treat gonorrhoea in general practice in Flanders 2009-2013. Belgian guidelines recommended ceftriaxone or alternatively spectinomycin from 2008 onwards and azithromycin combination therapy since 2012. The study investigated to which extent contemporary gonorrhoea treatment guidelines were followed. Ninety-one gonorrhoea cases with ten chlamydia and one genital trichomonas coinfections in 90 patients were registered between 2009 and 2013. The proportion of cases with ceftriaxone and/or spectinomycin prescriptions rose from 13% (two of 15 cases) in 2009 to 56% (nine of 16 cases) in 2013. Combination therapy of ceftriaxone and/or spectinomycin together with azithromycin rose from 0 of 15 cases (0%) in 2009 to 7 of 16 cases (44%) in 2013. Although numbers are small, the results suggest that gonorrhoea therapy guideline adherence improved between 2009 and 2013. Future opportunities, recommended in the final discussion, include (1) extending provider-led STI testing in Belgium, with a prominent role for general practitioners; (2) investigating barriers and facilitators for the achievement of the Global Medical File, notably if sensitive and potentially stigmatising issues such as STIs or mental health are involved; (3) making task delegation by the general practitioner towards other primary health care providers more attractive; (4) facilitating general practitioners' tasks by the introduction of support features into the EHR in order to improve registration and quality of care in general; (5) eliciting Regional government support in order to investigate the diagnostic profiles of the patient population of IPHCCs; and (6) establishing an extended network for the collection and analysis of "production data" (such as the number of contacts, interventions, referrals, prescriptions and diagnostic requests) from general practitioners and other primary health care providers, proceeding from the know-how and the experience of the three investigated GP networks. / Doctorat en Sciences de la santé Publique / info:eu-repo/semantics/nonPublished

No description available.

INTRODUCTION: Polycystic Ovary Syndrome (PCOS) is the most common endocrinopathy causing infertility in women of reproductive age. According to the Rotterdam criteria, a PCOS diagnosis should be given if at least two of the following are met: 1) hyperandrogenism; 2) oligo-anovulation; and 3) polycystic ovarian morphology. Previous studies analyzing the prevalence of PCOS have done so in unselected and clinical populations but few studies have attempted to characterize the syndrome and its long-term outcomes within Electronic Health Records using International Classification of Disease (ICD) codes. OBJECTIVES: With a hospital-based electronic health record dataset, this thesis seeks to: (1) characterize PCOS in reproductively aged women (18-34) using the diagnostic codes (ICD-9 and ICD-10) versus the Rotterdam criteria, (2) determine the prevalence of metabolic syndrome (MetS), Type 2 Diabetes, and cardiac events in women above age 35, (3) determine age of diagnosis for MetS and time to diagnosis of MetS. METHODS: The following 3 cohorts were queried on the Research Patient Data Registry (RPDR): 1) patients aged 18-34 with classic PCOS (phenotype A and B) but without an ICD diagnosis for PCOS, 2) patients aged 18-34 with a PCOS ICD-9/10 diagnosis and 3) patients above age 35 with a history or current diagnosis of PCOS. Their electronic health records (between January 1 , 2003 and December 31 , 2020) were ascertained from 9 Mass General Brigham institutions after IRB approval and analyzed on Software for Statistics and Data Science (STATA). RESULTS: Overall, RPDR identified 12,669 patients aged 18-34 who fit the Rotterdam criteria (under multiple phenotypes), 4646 of which had classic PCOS but lacked an ICD- 9/10 code for PCOS. RPDR also identified 9341 women aged 35 and above with a past or current diagnosis of PCOS. Hispanics/Latinas (18-34) were two times more likely to be undiagnosed when compared to Non-Hispanic Whites (OR: 2.25, 95% CI: 1.98-2.56). The prevalence of MetS, specified by a diagnostic code (277.7 or E88.81), and other cardiac conditions in women above age 35 were considerably lower than those found in the current literature. CONCLUSION: Databases such as RPDR allow for a detailed analysis of patient demographics, labs, procedures and diagnoses. Additionally, it allows for larger cohorts of patients matching more specific criteria to be ascertained. Future studies should compare the prevalence of individual features of MetS by ICD codes and analyze the cardiology reports to determine if the events are being reported but not codified. / 2023-11-30