Book

Strengthening Health Information Infrastructure for Health Care Quality Governance: Good Practices, Opportunities and Data Privacy Protection Challenges

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Book

Strengthening Health Information Infrastructure for Health Care Quality Governance: Good Practices, Opportunities and Data Privacy Protection Challenges

Abstract

Health data constitutes a significant resource in most OECD countries that could be used to improve population health, the quality of health care and the performance of health systems. Rising levels of chronic diseases; concerns about the quality and safety of patient care; the need to assure value for investments in health care; and the need to allocate health resources wisely; are all too important to be left without good evidence for decision making. This book, based on studies of 19 countries on the development and use of personal health data and of 25 countries on development and use of electronic health record systems, includes results showing good practices, new opportunities and data privacy protection challenges. It finds that well-intended policies to allay concerns about breaches of confidentiality and potential misuse of personal health data may be limiting data use, but that the next five years appear promising, in terms of both the number of countries that plan to implement national electronic health record systems and the number that consider it likely that data from these systems will be used for some aspects of health care quality monitoring. They also appear promising for the further use of existing personal health databases and for the linkage of multiple data sources to generate new evidence.
... The 2013/2014 Survey on data infrastructure and governance and the 2016 Survey on EHR design and secondary use have also both been used to inform this section. Complete results were published within comprehensive reviews of health data availability, governance and use in OECD member states, covering, among other aspects, the legislative framework, data collection and retention, data access, project approval and data security (OECD, 2015 [8]) (Oderkirk, 2017[9]). In 2018, the OECD conducted a new survey with the objective of mapping current practices and use of routinely collected data on prescribed and dispensed medicines in OECD and EU Member countries. ...
... Most countries have a single data custodian. A high level of centralisation in data retention, i.e. having a small number of custodians of national datasets, whether as a result of deliberate policy or default data collection processes, was found to be an advantage in exploiting the value of data (OECD, 2015 [8]). Centralisation removes the need to create data sharing agreements between individual custodians, facilitates linkage of datasets generated from different sources, and concentrates resources for data processing and analysis (ibid.). ...
... A major problem, however, is that many legislative instruments governing data, privacy and security predate the digital era, and their interpretation in the context of secondary use of electronic health data is difficult, including requirements for informed consent. Many countries have reported legislative barriers to the use of personal health data (OECD, 2013 [14]) (OECD, 2015 [8]). ...
... In 2011/12, the OECD undertook a study to better understand the challenges, the opportunities and the practices in the use of data to monitor and describe pathways of care and health care outcomes to enable health care quality and health system performance monitoring and research [9]. A mail-back questionnaire sought information about the general environment in each country for the secondary use of personal health data as well as specific case studies. ...
... Responses to the OECD country survey and the telephone interviews were consolidated into an OECD report that was reviewed by countries' health officials in both 2012 and 2013 and revised to reflect country comments [9] ...
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Health data constitute a significant resource in most OECD countries that could be used to improve health system performance. Well-intended policies to allay concerns about breaches of confidentiality and to reduce potential misuse of personal health information may be limiting data use. A survey of 20 OECD countries explored the extent to which countries have developed and use personal health data and the reasons why data use may be problematic in some. Countries are divided, with one-half engaged regularly in national data linkage studies to monitor health care quality. Country variation is linked to risk management in granting an exemption to patient consent requirements; in sharing identifiable data among government authorities; and in project approvals and granting access to data. The resources required to comply with data protection requirements is a secondary problem. The sharing of person-level data across borders for international comparisons is rarely reported and there were few examples of studies of health system performance. Laws and policies enabling data sharing and data linkage are needed to strengthen national information infrastructure. To develop international studies comparing health care quality and health system performance, actions are needed to address heterogeneity in data protection practices.
... Electronic Health Record (EHR) systems in a country enable patients to have an electronic record of their key characteristics and health concerns, as well as their history of encounters with the health care system and the treatments that they received from a variety of healthcare providers. The goals of such systems include not only improving the quality and safety of care for patients but also facilitating optimal care pathways and promoting efficiency in the use of health system resources (OECD, 2013). Furthermore, these systems are also considered as a tool for reducing the rate of medical error, improving quality, preventing adverse health outcomes from inappropriate treatment combinations, managing the huge volume of clinical, administrative, and regulatory information in contemporary health care (Farsi & West, 2006;Koontz, 2017). ...
... To be useful for the assessment of the quality of care, health and medical data collections need to be organized in a systematic and efficient way (OECD, 2013). At the same time, the confidentiality of the data needs to be protected and privacy rights addressed. ...
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This chapter aims to provide a holistic general overview of the data protection regime in Turkey. Furthermore, authors present the principal rights of data protection and transmission in health law and latent ethical concerns by specifying decisions of the Supreme Court in Turkey and the European Court of Human Rights on using personal data. The research is descriptive on data protection law for health care setting in Turkey. Primary as well as secondary data has been used for the study. The primary data includes the information collected with current national and international regulations or law. Secondary data include publications, books, journals, empirical legal studies. Privacy and data protection regimes in health law show there are some obligations, principles, and procedures which shall be binding upon natural or legal persons who process health-related personal data.
... The error resulted from the misreading of a sign in the paper-based record concerning the patient (25), which could have been prevented if data collection had been digitalised. Such examples reveal that there is still room for improvement in how health data are collected and shared between stakeholders in Switzerland, as already highlighted in a report by the OECD a few years ago (26). These persisting difficulties generate a considerable damage, in that they severely limit the health service research that could be conducted to inform policymaking in healthcare (19,27) and they are significant obstacles to having more transparency in the health sector (12). ...
... A relevant finding from our interviews is the focus of many recommendations on changes that are needed in the mind-set and attitudes of the actors involved in the processing of data. Although strengthening the data infrastructure in health remains crucial (26), it is important to also secure the commitment of stakeholders, whose approach and mind-set are preconditions to develop and exploit the health data infrastructure. For example, in a study on the development of a national programme for information technology in the public health system of the United Kingdom, it was noted that "persuading" stakeholders to commit to the development of the health data framework -which was likely to produce substantial benefits only in the long run -"is at least as great a challenge as the technical one" (37). ...
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Background: Facilitating access to health data for public health and research purposes is an important element in the health policy agenda of many countries. Improvements in this sense can only be achieved with the development of an appropriate data infrastructure and the implementations of policies that also respect societal preferences. Switzerland is a revealing example of a country that has been struggling to achieve this aim. The objective of the study is to reflect on stakeholders' recommendations on how to improve the health data framework of this country. Methods: We analysed the recommendations collected as part of a qualitative study including 48 expert stakeholders from Switzerland that have been working principally with health databases. Recommendations were divided in themes and subthemes according to applied thematic analysis. Results: Stakeholders recommended several potential improvements of the health data framework in Switzerland. At the general level of mind-set and attitude, they suggested to foster the development of an explicit health data strategy, better communication and the respect of societal preferences. In terms of infrastructure, there were calls for the creation of a national data center, the improvement of IT solutions and the use of a Unique Identifier for patient data. Lastly, they recommended harmonising procedures for data access and to clarify data protection and consent rules. Conclusion: Recommendations show several potential improvements of the health data framework, but they have to be reconciled with existing policies, infrastructures and ethico-legal limitations. Achieving a gradual implementation of the recommended solutions is the preferable way forward for Switzerland and a lesson for other countries that are also seeking to improve health data access for public health and research purposes.
... Electronic Health Record (EHR) systems in a country enable patients to have an electronic record of their key characteristics and health concerns, as well as their history of encounters with the health care system and the treatments that they received from a variety of healthcare providers. The goals of such systems include not only improving the quality and safety of care for patients but also facilitating optimal care pathways and promoting efficiency in the use of health system resources (OECD, 2013). Furthermore, these systems are also considered as a tool for reducing the rate of medical error, improving quality, preventing adverse health outcomes from inappropriate treatment combinations, managing the huge volume of clinical, administrative, and regulatory information in contemporary health care (Farsi & West, 2006;Koontz, 2017). ...
... To be useful for the assessment of the quality of care, health and medical data collections need to be organized in a systematic and efficient way (OECD, 2013). At the same time, the confidentiality of the data needs to be protected and privacy rights addressed. ...
Chapter
Full-text available
This chapter provides a holistic general overview of the data protection regime in Turkey. Authors present the principal rights of data protection and transmission in health law and latent ethical concerns by specifying decisions of the Supreme Court in Turkey and the European Court of Human Rights on using personal data. The research describes data protection law for health care setting in Turkey. Primary and secondary data have been used for the study. The primary data includes the information collected with current national and international regulations or law. Secondary data include publications, books, journals, and empirical legal studies. Privacy and data protection regimes in health law show there are some obligations, principles, and procedures which shall be binding upon natural or legal persons who process health-related personal data.
... This was partly due to the fact that the identity of the GPs belonging to the database HSD is confidential. Moreover, data linkage at individual or even GP level between different data sources had legal implications in terms of privacy regulations and the procedures needed to obtain permissions for such data collection [25] could not be managed in the context of the VALORE Project. ...
... Although this is unlikely to have happened consistently in five regions, an individual-level validation study only could address this concern. Italy, like several other countries, has a national legislation that permits exemption to the requirement for patient consent for projects in the public's interest [25], but this pathway was too complex to be faced in the context of the VALORE project. ...
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Background: Italy has a population of 60 million and a universal coverage single-payer healthcare system, which mandates collection of healthcare administrative data in a uniform fashion throughout the country. On the other hand, organization of the health system takes place at the regional level, and local initiatives generate natural experiments. This is happening in particular in primary care, due to the need to face the growing burden of chronic diseases. Health services research can compare and evaluate local initiatives on the basis of the common healthcare administrative data.However reliability of such data in this context needs to be assessed, especially when comparing different regions of the country. In this paper we investigated the validity of healthcare administrative databases to compute indicators of compliance with standards of care for diabetes, ischaemic heart disease (IHD) and heart failure (HF). Methods: We compared indicators estimated from healthcare administrative data collected by Local Health Authorities in five Italian regions with corresponding estimates from clinical data collected by General Practitioners (GPs). Four indicators of diagnostic follow-up (two for diabetes, one for IHD and one for HF) and four indicators of appropriate therapy (two each for IHD and HF) were considered. Results: Agreement between the two data sources was very good, except for indicators of laboratory diagnostic follow-up in one region and for the indicator of bioimaging diagnostic follow-up in all regions, where measurement with administrative data underestimated quality. Conclusion: According to evidence presented in this study, estimating compliance with standards of care for diabetes, ischaemic heart disease and heart failure from healthcare databases is likely to produce reliable results, even though completeness of data on diagnostic procedures should be assessed first. Performing studies comparing regions using such indicators as outcomes is a promising development with potential to improve quality governance in the Italian healthcare system.
... To meet the need of using electronic health record systems as a basis and platform for designing wise policy and to improve population health, the quality of health care and the performance of health systems-the OECD published a thorough report, which summarizes the progress in OECD countries and challenges regarding: health informatics infrastructure, protection of privacy, regulations, collection and use of personal health data, data linkage and access, and above all-similarities and differences among countries' data systems, challenges, and opportunities at the national levels (103). Most of these aspects have been deliberated here with regard to the proposed model, bringing to light both shared guiding principles and unique opportunities. ...
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Background In the era of big data, the medical community is inspired to maximize the utilization and processing of the rapidly expanding medical datasets for clinical-related and policy-driven research. This requires a medical database that can be aggregated, interpreted, and integrated at both the individual and population levels. Policymakers seek data as a lever for wise, evidence-based decision-making and information-driven policy. Yet, bridging the gap between data collection, research, and policymaking, is a major challenge.The modelTo bridge this gap, we propose a four-step model: (A) creating a conjoined task force of all relevant parties to declare a national program to promote collaborations; (B) promoting a national digital records project, or at least a network of synchronized and integrated databases, in an accessible transparent manner; (C) creating an interoperative national research environment to enable the analysis of the organized and integrated data and to generate evidence; and (D) utilizing the evidence to improve decision-making, to support a wisely chosen national policy. For the latter purpose, we also developed a novel multidimensional set of criteria to illuminate insights and estimate the risk for future morbidity based on current medical conditions.Conclusion Used by policymakers, providers of health plans, caregivers, and health organizations, we presume this model will assist transforming evidence generation to support the design of health policy and programs, as well as improved decision-making about health and health care, at all levels: individual, communal, organizational, and national.
... Administrative databases are a relevant data source in most OECD countries and can be used to improve pop- ulation health and the quality of and the performance of health care systems. 36 Data retrieved from administrative databases can better assess the burden of disease and its temporal and spatial trends, as well as the uptake of ther- apeutics, with real-world implications for policy changes. 37 Furthermore, relying on robust information systems is 1 of the fundamental components of the clinical governance. ...
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Background Chronic obstructive pulmonary disease (COPD) is a major cause of morbidity and mortality worldwide. However, COPD is still underdiagnosed, undertreated, and not sufficiently prevented. Health administrative databases provide a powerful way of studying COPD in the population. Methods This retrospective study used administrative data, collected during 2011 and 2012, retrieved from 3 Italian local health authorities (LHAs). Results The analysis through administrative databases allowed firstly to identify patients with COPD receiving services by the 3 LHAs: The estimated average is ~3% of the population aged ≥40 years. Furthermore, it was also possible to stratify patients by investigating the health consumption in hospitalization for COPD and use of respiratory drugs. In all 3 LHA patients with moderate COPD were the majority of the population with COPD. Finally, it was possible to distinguish patients who made an appropriate use of SABA (76% of the total), patients who had a potentially inappropriate use (20%), and those with an overuse of SABA (4%). Conclusion The use of SABA consumption patterns can be a reliable proxy variable to detect subgroups who may necessitate therapy revision. Health administrative databases seem beneficial for planning health care interventions, including the COPD field. They are robust information systems subjected to regular data quality controls remaining the prevalent data source, reliable because of the amount of data and the population coverage, especially in countries with a National Health Service System.
... Internationally, data linkage is an active component of evaluating health system performance [66] and, ultimately , improving care and population health. Learning from new data linkage projects in the US676869 and more established ones in Europe707172 will provide further evidence on the potential for data linkages with electronic health records to address important public health problems like childhood obesity. ...
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Background Despite the need to identify the causes of disparities in childhood obesity, the existing epidemiologic studies of early life risk factors have several limitations. We report on the construction of the Linked CENTURY database, incorporating CENTURY (Collecting Electronic Nutrition Trajectory Data Using Records of Youth) Study data with birth certificates; and discuss the potential implications of combining clinical and public health data sources in examining the etiology of disparities in childhood obesity. Methods We linked the existing CENTURY Study, a database of 269,959 singleton children from birth to age 18 years with measured heights and weights, with each child’s Massachusetts birth certificate, which captures information on their mothers’ pregnancy history and detailed socio-demographic information of both mothers and fathers. Results Overall, 74.2 % were matched, resulting in 200,343 children in the Linked CENTURY Study with 1,580,597 well child visits. Among this cohort, 94.0 % (188,334) of children have some father information available on the birth certificate and 60.9 % (121,917) of children have at least one other sibling in the dataset. Using maternal race/ethnicity from the birth certificate as an indicator of children’s race/ethnicity, 75.7 % of children were white, 11.6 % black, 4.6 % Hispanic, and 5.7 % Asian. Based on socio-demographic information from the birth certificate, 20.0 % of mothers were non-US born, 5.9 % smoked during pregnancy, 76.3 % initiated breastfeeding, and 11.0 % of mothers had their delivery paid for by public health insurance. Using clinical data from the CENTURY Study, 22.7 % of children had a weight-for-length ≥ 95th percentile between 1 and 24 months and 12.0 % of children had a body mass index ≥ 95th percentile at ages 5 and 17 years. Conclusions By linking routinely-collected data sources, it is possible to address research questions that could not be answered with either source alone. Linkage between a clinical database and each child’s birth certificate has created a unique dataset with nearly complete racial/ethnic and socio-demographic information from both parents, which has the potential to examine the etiology of racial/ethnic and socioeconomic disparities in childhood obesity.
... This conjunction has contributed to the orientation towards a system of overall quality management (1,2) and to the adoption of modern management practices as well as strategic and open government. These features are characterized mostly through the principles of transparency, efficiency, equity, responsiveness and ensuring of quality services, which satisfy the expectations of people who use the Greek health system (3)(4)(5). The introduction and usage of modern tools of administration and management has been a continuous procedure and has as an ongoing goal the increase in productivity, the rationalization of the expenses and the best possible utilization of the available resources, either material or human (6,7). ...
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Introduction: In order to improve the level of public administration, the Greek government mandated the use of the electronic system "Clarity", requiring all public bodies to upload their administrative and financial data on the Internet in an effort to curb corruption, increase control and create a sense of trust between the state and the public. Particular emphasis was placed on the application of the "Clarity" system into the healthcare sector, especially in hospitals. Aim: The goal of this primary quantitative and qualitative research is to investigate the implementation of the "Clarity" in the Greek health system in terms of transparency the administrative and financial activity of the NHS hospitals for both health professionals and users. Methods: Research materials include examination of the AHEPA Hospital (Thessaloniki) archives, which is used as a case study, and qualitative research questionnaires. A study sample has also been provided by all licensed program users (32 participants). Results: According to the findings within a university general hospital, this program helps to promote hospital management and guarantees a controlled and secure sharing of the majority of the administrative acts and decisions adopted. Also "Clarity" consolidates reliability and accountability; it promotes the direct communication of services and contributes towards a better systematization and data collection in order to upgrade the administrative/functional capacity and the control of expenditures. Conclusion: The benefits from the program "Clarity" can be increased through the functional interconnection of other similar electronic networking programs, setting as a prerequisite the creation of appropriate material infrastructure and personnel training.
... In many countries, the systematic organization of standardized databases needs to be improved first. Better data quality strategies (particularly for coding practices) are needed for the routine application of computerized data linkage, also hampered by a heterogeneous implementation of the EU Data Protection Directive [15]. ...
Article
The European Union needs a common health information infrastructure to support policy and governance on a routine basis. A stream of initiatives conducted in Europe during the last decade resulted into several success stories, but did not specify a unified framework that could be broadly implemented on a continental level. The recent debate raised a potential controversy on the different roles and responsibilities of policy makers vs the public health community in the construction of such a pan-European health information system. While institutional bodies shall clarify the statutory conditions under which such an endeavour is to be carried out, researchers should define a common framework for optimal cross-border information exchange. This paper conceptualizes a general solution emerging from past experiences, introducing a governance structure and overarching framework that can be realized through four main action lines, underpinned by the key principle of "Essential Levels of Health Information" for Europe. The proposed information model is amenable to be applied in a consistent manner at both national and EU level. If realized, the four action lines outlined here will allow developing a EU health information infrastructure that would effectively integrate best practices emerging from EU public health initiatives, including projects and joint actions carried out during the last ten years. The proposed approach adds new content to the ongoing debate on the future activity of the European Commission in the area of health information. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.
... Health data constitutes a significant resource and it makes economic and ethical sense to use this data as much as possible to improve the health of the population and the effectiveness, safety, and patient-centeredness of healthcare systems. Rising levels of chronic disease and multi-morbidity, concerns about the quality and safety of patient care, the need to measure and assure value for money for investments in health, and the need to allocate health system resources require good evidence for decision making (Figure 1) [5]. Health system managers and policy makers are moving towards performance-based governance to improve care quality, co-ordination, and efficiency. ...
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This article identifies the main challenges of the National Health Service of Spain and proposes its transformation into a Learning Health System. For this purpose, the main indicators and reports published by the Spanish Ministries of Health and Finance, Organization for Economic Co-operation and Development (OECD) and World Health Organization (WHO) were reviewed. The Learning Health System proposal is based on some sections of an unpublished report, written by two of the authors under request of the Ministry of Health of Spain on Big Data for the National Health System. The main challenges identified are the rising old age dependency ratio; health expenditure pressures and the likely increase of out-of-pocket expenditure; drug expenditures, both retail and consumed in hospitals; waiting lists for surgery; potentially preventable hospital admissions; and the use of electronic health record (EHR) data to fulfil national health information and research objectives. To improve its efficacy, efficiency, and quality, the National Health Service of Spain should be transformed into a Learning Health System. Information and communication technologies (IT) enablers are a fundamental tool to address the complexity and vastness of health data as well as the urgency that clinical and management decisions require. Big Data solutions are a perfect match for that problem in health systems.
... 4 However, many countries miss out on opportunities to improve clinical practice using linked data. 5 An example for putting data linkage to action is the National Board of Health and Welfare in Sweden, which monitors compliance of providers with national clinical guidelines in various disease areas using data from its patient registries network (the National Quality Registries) that are linked to mortality and prescriptions databases. Performance across providers can be compared and reasons for shortcomings investigated, which in turn informs action plans for clinical practice improvement. ...
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Summary: Linking existing databases is seen as key to unlocking the potential of big data to revolutionise health care. Shared electronic health records and provider benchmarking can improve the quality of care, while linked databases are deemed enablers to support the transformation towards value-based health care. The wealth of collected data allows researchers to answer questions that are of high relevance for policy-makers, patients and providers. However, data privacy concerns pose a challenge to the integration of data sources. Effective use of big data to transform health care systems requires substantial commitment from all stakeholders and a strong governance framework.
... Na ausência de um identificador unívoco, quase sempre o rastreamento probabilístico possuí sensibilidade consideravelmente superior ao determinístico 14 . Diversos países, especialmente na Europa e na América do Norte, adotaram identificadores unívocos nos registros de saúde, seja usando números específicos do setor saúde ou outros já em uso para outras finalidades no país 15 . A existência de um identificador único permite relacionamento determinístico de diversos registros de um mesmo indivíduo de forma mais eficiente e confiável. ...
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Introduction: The National Health Card (CNS) was created to be an instrument of individual identification of the citizen. In the databases provided by DATASUS, the variable CNS is encoded. Objective: To verify if the encoded variable of the CNS in public databases provided by DATASUS can be used as a unique identifier of the patient. Method: It was conducted a deterministic linkage between the High Complexity Procedures in Oncology (Apac-onco) database of chemotherapy and radiotherapy, provided by DATASUS, and the databases of an oncology reference hospital located in the State of Rio de Janeiro, considering data from 2010 to 2016. Results: In the database of chemotherapy, 2.83% of the CNSs had more than one encoding and, in radiotherapy’s, 0.55% similarly. Consequently, the utilization of the CNS encoded exceeded the count of 45.5% of the 77 CID of the chemotherapy database and 20.2% of the 84 CID of radiotherapy. Conclusion: In the current format, the CNS encoded does not ensure a univocal identification of SUS patients, making it difficult to follow up the procedures, to estimate the treatment costs, identify barriers to access and plan the health care system organization.
... As the incidence of symptomatic SEH has been extremely low, most extant studies on the topic are case studies based on individual clinics [7,8]. Far less is known on the Asian population including South Korea and Japan regarding all types of SEH, and even the exclusive diagnostic code for SEH has not yet been established [9,10]. ...
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Background: With increasing number of patients undergoing spine surgery, the spinal epidural hemorrhage (SEH) has become a growing concern. However, current studies on SEH rely on case reports or observations from a single center. Our study attempted to demonstrate the incidence rate and risk factors of SEH using a national dataset. Methods: A total of 17,549 spine surgery cases from the Health Insurance Review and Assessment Service National Inpatient Sample of 2014 were analyzed. After evaluating the incidence of SEH based on severe cases requiring reoperation, a univariate comparison was performed. Variables found to be significant were included in a multivariable analysis model to determine the risk factors. Results: The incidence of SEH was found to be 1.15% in Korean population, and there were no severe SEH cases. Our analysis confirmed the previous findings that lumbar surgery, intraoperative blood loss, prolonged surgical time, high blood pressure, use of nonsteroidal anti-inflammatory drugs, and concurrent bleeding factors are the risk factors of SEH. Anterior approach showed a protective effect. The use of anticoagulant demonstrated no statistical significance. Conclusion: Although severe SEH cases were not detected, the incidence of SEH was similar to that reported in literature. Given that SEH is a rare complication of spine surgery and constitutes an important research area that needs to be studied further, our study makes a meaningful contribution based on a rigorous national level sample for the first time and provides the academic circle and health professionals with a reliable evidence of improved clinical outcomes in such cases.
... Good quality information, whether generated by manual or technological systems, can support quality decision making which ultimately leads to improved quality of care (27). Conversely, inaccurate information can lead to poor choices in health investments. ...
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Background Hospital management information systems (HMIS) is a key component of national health information systems (HIS), and actions required of hospital management to support information generation in Kenya are articulated in specific policy documents. We conducted an evaluation of core functions of data generation and reporting within hospitals in Kenya to facilitate interpretation of national reports and to provide guidance on key areas requiring improvement to support data use in decision making. Design The survey was a cross-sectional, cluster sample study conducted in 22 hospitals in Kenya. The statistical analysis was descriptive with adjustment for clustering. Results Most of the HMIS departments complied with formal guidance to develop departmental plans. However, only a few (3/22) had carried out a data quality audit in the 12 months prior to the survey. On average 3% (range 1–8%) of the total hospital income was allocated to the HMIS departments. About half of the records officer positions were filled and about half (13/22) of hospitals had implemented some form of electronic health record largely focused on improving patient billing and not linked to the district HIS. Completeness of manual patient registers varied, being 90% (95% CI 80.1–99.3%), 75.8% (95% CI 68.7–82.8%), and 58% (95% CI 50.4–65.1%) in maternal child health clinic, maternity, and pediatric wards, respectively. Vital events notification rates were low with 25.7, 42.6, and 71.3% of neonatal deaths, infant deaths, and live births recorded, respectively. Routine hospital reports suggested slight over-reporting of live births and under-reporting of fresh stillbirths and neonatal deaths. Conclusions Study findings indicate that the HMIS does not deliver quality data. Significant constraints exist in data quality assurance, supervisory support, data infrastructure in respect to information and communications technology application, human resources, financial resources, and integration.
... Although technology can facilitate older people's lives and they are increasingly incorporating it into their routines, the elderly typically experience more difficulties in learning to use and operate technology than younger adults [7]. As for overcoming the data privacy issues, voluntary consensus are preferred [8]; therefore, older people need to understand the importance of and agree to provide data using electronic devices [9]. ...
Article
Introduction: In an effort to develop a Learning Health System (LHS) for a healthy ageing society, this study launched an Internet of Things (IoT) platform in a senior residential community to continuously generate behavior logs. Methods: Considering that older adults experience difficulties in technology adaptation and declined information processing abilities, senior residents only needed to carry around a card sized beacon which was the tracking device. Participant recruitment took place in a continuing care retirement community. Individual feedback was obtained quarterly. Results: During the first 16 months, 111 residents, aged 67 to 97 years, joined the program, and nearly 90% of them were consistently monitored in their everyday lives. Participants’ average daily walking distance was slightly less than 1 km. The average time spent socializing was between 1 to 1.5 hours per day. Conclusion: The IoT platform offers the possibility of extending the target population and scope of data, as well as incorporating experimental study designs. It is expected that factors affecting older people’s everyday lives and their consequences on health outcomes are continuously studied, learned from and improved.
... Within this context of biomedical research and data protection law, the latter is often perceived as a potential hindrance from the perspective of researchers. In international reports on the status quo of the health-data framework of Switzerland and other developed countries, it is often referenced to as "legal barriers" (e.g., [14]). Indeed, even in interviews with national stakeholders conducted for our ongoing research on the health-data framework in Switzerland 2 [15], a common complaint from researchers was that navigating data protection rules is demanding. ...
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Ensuring the protection of privacy and the compliance with data protection rules have become central issues for researchers active in the biomedical field. Data protection law is often perceived as very complex and difficult to interpret, which can hinder the efficacious planning and implementation of new research projects. Indeed, the sophisticated legal architecture that governs data processing activities in general and biomedical research in particular might feel overwhelming for both legal practitioners and researchers. The objective of this article is to review the interaction of data protection law and biomedical research with a predominant focus on the Swiss context. In order to facilitate a better understanding of this issue, we discuss three crucial nodes that shape the interplay of law and data processing in research First, we explore the meaning of “personal” data, the requirements to classify data as “personal”, “non-personal”, “pseudonymised” or “anonymised” and the implications of such classifications from a legal perspective. We then consider the relationship between sector-specific data processing regulations for research and other laws on data protection. Finally, we examine the role of consent for data processing in the research field and its significance from a data protection perspective. In conclusion, this review underlines the importance of fostering reciprocal collaboration of data protection experts and biomedical researchers to facilitate the development of new projects in the future. &nbsp.
... Dissemination should be in a way that enables researchers and policymakers to make secure inferences about comparative performance. A recent report by the OECD signaled important differences amongst countries in both the data that are available and their accessibility and use [22]. There are also variations in countries' capacity to strengthen health information infrastructure in the future. ...
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The concept of the ‘health system’ has become central to debates about health policy since the publication of the World Health Report 2000[1]. In that report, the WHO defined the health system as “…all the activities whose primary purpose is to promote, restore or maintain health”. That broad definition is closely aligned to the role of most health ministries, which includes the promotion of health and prevention of disease, as well as the organization of health services. It is therefore not surprising that many policy makers have expressed particular interest in understanding better how their health system works, and identifying the scope for improvement.
... Switzerland provides an example of how quality of rehabilitation services can be assessed at national level ( Figure 2). To ensure the delivery of effective, person-centered rehabilitation countries should increase efforts to promote the development and implementation of clinical rehabilitation guidelines and improve clinical information and decision support systems within the frame of existing national quality improvement strategies [133,134]. ...
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Investment in action is vital to confront the challenges associated with chronic diseases and disability facing European health systems. Although relevant policy responses are being increasingly developed, most of them fail to recognize the role of rehabilitation services in achieving public health and social goals. Comprehensive guidance is thus urgently needed to support rehabilitation policy development and expand access to rehabilitation care to meet population needs effectively. This paper describes a framework to guide policy action for rehabilitation in Europe. The framework was developed in collaboration with the European Academy of Rehabilitation Medicine based on a focused literature review and expert consultations. A review in PubMed and grey literature sources identified 458 references and resulted in 135 relevant documents published between 2006 and 2019. Thematic analysis of extracted information helped summarize the findings and develop the draft policy action framework. This was circulated to a wider group of experts and discussed in three workshops in 2018 -2019. The framework was revised according to their feedback. The proposed framework contains 48 options for policy action organized in six domains and twelve subdomains that address several areas of health programming. The proposed framework provides a structure to understand the policy terrain related to rehabilitation in Europe and the measures required for translating aspirational political pronouncements into targeted programmatic action and tangible health and social outcomes.
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This chapter analyzes the European Union framing of the protection of genetic privacy in the context of the European Commission's 2012 proposal to amend the 95/46/EC Data Protection Directive. This market-driven proposal, fitting a wider European movement with regard to health-related legal framework, takes into account the challenges to privacy protection brought by rapid technological development. Although the proposal is an attempt to clarify the 1995 Data Protection Directive, including the question of genetic data, it also creates some controversial grey areas, especially concerning the extensive regulatory role to be played by the European Commission. With regard to genetic privacy, this chapter takes the opportunity to develop on this paradox, and gives an analysis of the European design on the matter © 2015, IGI Global. Copying or distributing in print or electronic forms without written permission of IGI Global is prohibited.
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Summary Chapter Albrecht, U.-V.: Kapitel Kurzfassung. In: Albrecht, U.-V. (Hrsg.), Chancen und Risiken von Gesundheits-Apps (CHARISMHA). Medizinische Hochschule Hannover, 2016, S. 14–47. urn:nbn:de:gbv:084-16040811173. http://www.digibib.tu-bs.de/?docid=60004
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The exponential growth of emerging technologies opens up new opportunities for knowledge and its application, on human being, forcing us at the same time to rethink some traditional ethical and legal categories, such as freedom, responsibility, conscience, will, intention. The chapter focuses on neuroscience and neurotechnologies, gene-editing and genome-wide tests, the new paradigm of the 4P medicine (prediction, precision, personalization, participation), citizen science, the use of information and communication technologies, big data, mobile-health and biometrics, related to health and healthcare, underlining the main ethical and legal challenges.
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ΠΕΡΙΛΗΨΗ Εισαγωγή: Το ηλεκτρονικό διαδικτυακό πρόγραμμα «Δι@ύγεια» στοχεύει στη διαφάνεια της διοικητικής δραστηριότητας, στην ασφαλή διάχυση των πληροφοριών αλλά και στην απρόσκοπτη πρόσβαση σε αυτές τόσο του πολίτηχρήστη όσο και των επαγγελματιών υγείας. Συμβάλλει παράλληλα στην ενίσχυση της υπευθυνότητας και της λογοδοσίας, στην άμεση επικοινωνία και τον συντονισμό των υπηρεσιών καθώς και στην οργάνωση, συστηματοποίηση και συλλογή δεδομένων για την αναβάθμιση της διοικητικής/λειτουργικής ικανότητας και τον έλεγχο των δαπανών. Σκοπός: Επιδιώκεται η αξιολόγηση του τρόπου υλοποίησής του στο χώρο της υγείας και ειδικότερα στις διοικητικές υπηρεσίες του Π.Γ.Ν.Θ. ΑΧΕΠΑ, που έχει επιλεγεί ως μελέτη περίπτωσης (case study). Επιχειρείται επίσης ο εντοπισμός αναγκών και δυσλειτουργιών, η διατύπωση προτάσεων για τη βέλτιστη χρήση του, η διερεύνηση της συμβολής του στο νοσοκομειακό μάνατζμεντ καθώς και η δυνατότητα διασύνδεσής του με ηλεκτρονικά προγράμματα που υλοποιούνται πρόσφατα στο ελληνικό σύστημα υγείας. Υλικό-Μέθοδος: Το υλικό της μελέτης αποτέλεσαν οι αρχειακές πηγές του Π.Γ.Ν.Θ. ΑΧΕΠΑ της περιόδου 2009-2012 και τα δεδομένα ερωτηματολογίου ποιοτικής έρευνας με ερωτήσεις ανοικτού και κλειστού τύπου, το οποίο συμπλήρωσαν όλοι οι εξουσιοδοτημένοι χειριστές του προγράμματος στο νοσοκομείο, με δικαίωμα σύνδεσης και ανάρτησης αποφάσεων. Αποτελέσματα-Συμπεράσματα: Η ανάλυση των δεδομένων της πρωτογενούς ποσοτικής και ποιοτικής έρευνας καταδεικνύει τη χρησιμότητα του προγράμματος και τη συμβολή του στην προώθηση του νοσοκομειακού μάνατζμεντ. Το πρόγραμμα της «Δι@ύγειας» στο Π.Γ.Ν.Θ. ΑΧΕΠΑ διασφαλίζει τη διαφάνεια και την ελεγχόμενη δημοσιοποίηση της πλειοψηφίας των παραγόμενων πράξεων και αποφάσεων. Διαπιστώνεται η δυνατότητα λειτουργικής διασύνδεσής του κυρίως με το «ESY.net» και το «Παρατηρητήριο Τιμών», θέτοντας ως προαπαιτούμενα τη δημιουργία κατάλληλης υλικοτεχνικής υποδομής και την εκπαίδευση του ανθρώπινου δυναμικού. Λέξεις-κλειδιά: διαφάνεια διοικητικής δραστηριότητας, ηλεκτρονικά προγράμματα υγείας, νοσοκομειακό μάνατζμεντ, αξιολόγηση, διασυνδεσιμότητα.
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Background: Growing demand for medical services has increased patient waiting time due to the limited number or unbalanced distribution of healthcare centers. Healthcare teleconsultation networks are one of the potentially powerful systems to overcome this problem. Medical pathology can hugely benefit from teleconsultation networks because having second opinions is precious for many cases; however, resource planning (i.e., assignment and distribution of pathology consultation requests) is challenging due to bulky medical images of patients. This results in high setup and operational costs. The aim of this study is to design an optimal teleconsultation network for pathology labs under the supervision of medical sciences universities in Tehran, Iran. Methods: To avoid the setup cost, we first propose a modified hybrid peer-to-peer (P2P) overlay architecture for our telepathology network, using Iran's National Healthcare Information Network (SHAMS) as the underlying infrastructure. Then we apply optimization techniques to solve the request assignment and distribution problems in the network. Finally, we present a novel mathematical model with the objective of minimizing the variable operational costs of the system. Results: The efficiency of the proposed method was evaluated by a set of practical-sized network instances simulated based on the characteristics of SHAMS. The results show that the presented model and architecture can obtain optimal solutions for network instances up to 350 nodes, which covers our target network. Conclusions: We believe that the proposed method can be beneficial for designing large-scale medical teleconsultation networks by adjusting the constraints according to the rules and conditions of each country. Our findings showed that teleconsultation networks in countries with strong information technology (IT) infrastructures are under the influence of consultation fees, while in countries with weak IT infrastructure, the transmission costs are more critical. To the best of our knowledge, no research has so far addressed resource planning in medical teleconsultation networks using optimization techniques. Besides, the target network, i.e., pathology labs under the supervision of medical sciences universities in Tehran and the SHAMS network, are discussed for the first time in this work.
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Background District Health Information Systems 2 (DHIS2) is used for supporting health information management in 67 countries, including Solomon Islands. However, there have been few published evaluations of the performance of DHIS2-enhanced disease reporting systems, in particular for monitoring infectious diseases such as malaria. The aim of this study was to evaluate DHIS2 supported malaria reporting in Solomon Islands and to develop recommendations for improving the system. Methods The evaluation was conducted in three administrative areas of Solomon Islands: Honoria City Council, and Malaita and Guadalcanal Provinces. Records of nine malaria indicators including report submission date, total malaria cases, Plasmodium falciparum case record, Plasmodium vivax case record, clinical malaria, malaria diagnosed with microscopy, malaria diagnosed with (rapid diagnostic test) (RDT), record of drug stocks and records of RDT stocks from 1st January to 31st December 2016 were extracted from the DHIS2 database. The indicators permitted assessment in four core areas: availability, completeness, timeliness and reliability. To explore perceptions and point of view of the stakeholders on the performance of the malaria case reporting system, focus group discussions were conducted with health centre nurses, whilst in-depth interviews were conducted with stakeholder representatives from government (province and national) staff and World Health Organization officials who were users of DHIS2. Results Data were extracted from nine health centres in Honoria City Council and 64 health centres in Malaita Province. The completeness and timeliness from the two provinces of all nine indicators were 28.2% and 5.1%, respectively. The most reliable indicator in DHIS2 was ‘clinical malaria’ (i.e. numbers of clinically diagnosed malaria cases) with 62.4% reliability. Challenges to completeness were a lack of supervision, limited feedback, high workload, and a lack of training and refresher courses. Health centres located in geographically remote areas, a lack of regular transport, high workload and too many variables in the reporting forms led to delays in timely reporting. Reliability of reports was impacted by a lack of technical professionals such as statisticians and unavailability of tally sheets and reporting forms. Conclusion The availability, completeness, timeliness and reliability of nine malaria indicators collected in DHIS2 were variable within the study area, but generally low. Continued onsite support, supervision, feedback and additional enhancements, such as electronic reporting will be required to further improve the malaria reporting system.
Conference Paper
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Purpose: Sentiment Analysis (SA) or Opinion Mining (OM) is the field of study for a broader topic of Natural Language Processing. SA seeks to understand people's opinions, feelings, assessments, attitudes and emotions through text to generate knowledge and relevant information on a particular subject, in the business world with a greater focus on understanding the evaluation of products. We can often resume to an interpretation of attitude behind the text whether it is positive, negative or neutral. The growing importance of SA coincides with the growth of social networks, opinions, criticism, forum discussions, blogs, among others. With this exponential evolution of data has arisen the need to apply SA in almost all social and commercial domains, because opinions are key in almost all activities and are one of the influencing factors in human and social behaviors, beliefs and perceptions of our own choices. As the opinion is one of the main influencing factors in the people's choice has made the spectrum of analysis broader for organizations making this a very relevant topic these days. This paper revealed that although there some advances for algorithms, techniques and frameworks to help SA implementations there is still a gap towards identifying benefits for business applications. The need for a systematic review arises from the requirement to summarize all relevant information about application and creation of value for SA implementations in organizations. Design/methodology/approach: Include the main method(s) used for the research. In order to draw a general conclusion about this phenomenon we will evaluate individual studies that could help us understand the main features of this field. Findings: In summary, we learned that although there some advances for algorithms, techniques and frameworks to help SA implementations there is still a gap towards identifying benefits for business applications. We believe that the results of our systematic review will help to advance future studies to search for these gaps. Originality/value: Summarize all relevant information about application and creation of value for SA implementations in organizations. KEYWORDS: Sentiment Analysis, Opinion Mining, Text Mining, case study, application
Chapter
As described in the previous chapters, representative and high-quality data are essential for effective health information systems and monitoring strategies. Population health monitoring covers topics in the full range of human health and its influencing factors, and these domains are typically structured into conceptual frameworks and described in terms of indicators. These indicators can be derived from several different types of data sources, such as surveys, registers, and clinical and social epidemiological studies. The aim of this chapter is to provide insight into the various types of data sources available for public health monitoring purposes, their characteristics, specific applications, potential and limitations. The main focus of the chapter will be on the two major types of data sources used for population health monitoring: health surveys and registers. The main causes of bias, influencing data quality and validity, and issues with data access and linkage are addressed as the most important factors limiting the usability of data. The role of data protection and data governance in this is explored. The chapter will conclude with an overview of the most important current and expected future developments in the field of health-related data collection.
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