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Abstract Background In conflict settings, as it is the case in Syria, it is crucial to enhance health information management to facilitate an effective and sustainable approach to strengthening health systems in such contexts. In this study, we aim to provide a baseline understanding of the present state of health information management in Northwest Syria (NWS) to better plan for strengthening the health information system of the area that is transitioning to an early-recovery stage. Methods A combination of questionnaires and subsequent interviews was used for data collection. Purposive sampling was used to select twenty-one respondents directly involved in managing and directing different domains of health information in the NWS who worked with local NGOs, INGOs, UN-agencies, or part of the Health Working Group. A scoring system for each public health domain was constructed based on the number and quality of the available datasets for these domains, which were established by Checci and others. Results & conclusions Reliable and aggregate health information in the NWS is limited, despite some improvements made over the past decade. The conflict restricted and challenged efforts to establish a concentrated and harmonized HIS in the NWS, which led to a lack of leadership, poor coordination, and duplication of key activities. Although the UN established the EWARN and HeRAMS as common data collection systems in the NWS, they are directed toward advocacy and managed by external experts with little participation or access from local stakeholders to these datasets. Recommendations There is a need for participatory approaches and the empowerment of local actors and local NGOs, cooperation between local and international stakeholders to increase access to data, and a central domain for planning, organization, and harmonizing the process. To enhance the humanitarian health response in Syria and other crisis areas, it is imperative to invest in data collection and utilisation, mHealth and eHealth technologies, capacity building, and robust technical and autonomous leadership.

Background: In conflict settings, as it is the case in Syria, it is crucial to enhance health information management to facilitate an effective and sustainable approach to strengthening health systems in such contexts. In this study, we aim to provide a baseline understanding of the present state of health information management in Northwest Syria (NWS) to better plan for strengthening the health information system of the area that is transitioning to an early-recovery stage. Methods: A combination of questionnaires and subsequent interviews was used for data collection. Purposive sampling was used to select twenty-one respondents directly involved in managing and directing different domains of health information in the NWS who worked with local NGOs, INGOs, UN-agencies, or part of the Health Working Group. A scoring system for each public health domain was constructed based on the number and quality of the available datasets for these domains, which were established by Checci and others. Results & conclusions: Reliable and aggregate health information in the NWS is limited, despite some improvements made over the past decade. The conflict restricted and challenged efforts to establish a concentrated and harmonized HIS in the NWS, which led to a lack of leadership, poor coordination, and duplication of key activities. Although the UN established the EWARN and HeRAMS as common data collection systems in the NWS, they are directed toward advocacy and managed by external experts with little participation or access from local stakeholders to these datasets. Recommendations: There is a need for participatory approaches and the empowerment of local actors and local NGOs, cooperation between local and international stakeholders to increase access to data, and a central domain for planning, organization, and harmonizing the process. To enhance the humanitarian health response in Syria and other crisis areas, it is imperative to invest in data collection and utilisation, mHealth and eHealth technologies, capacity building, and robust technical and autonomous leadership. [ABSTRACT FROM AUTHOR]

Many Blockchain-based approaches have been published in the field of health data management applications (HDMAs). However, no comprehensive guideline exists to guide the multiple and interdependent design decisions to develop such systems. This paper aims to support the HDMA system design processes by introducing a novel decision model. The model considers all relevant requirements, from regulatory context to user needs and trust considerations. To generate the decision model, we define a taxonomy that organizes previously published approaches by their technical design features and combines it with the trust assumptions of the participating actors according to the STRIDE method. The model aims to support a cohesive overall system design by addressing Blockchain type, off-chain storage, identity and access management, security decisions, and the specific use case of data donation. A group of experts evaluated the decision tree and its utility is demonstrated in three representative use cases. Special attention is paid to the use case of data donation via a data trustee, which is examined in detail. [ABSTRACT FROM AUTHOR]

Resumen: Introducción: Los avances tecnológicos continúan transformando la sociedad, incluyendo el sector de la salud. La naturaleza descentralizada y verificable de la tecnología blockchain presenta un gran potencial para abordar desafíos actuales en la gestión de datos sanitarios. Discusión: Este artículo indaga sobre cómo la adopción generalizada de blockchain se enfrenta a importantes desafíos y barreras que deben abordarse, como la falta de regulación, la complejidad técnica, la salvaguarda de la privacidad y los costos tanto económicos como tecnológicos. La colaboración entre profesionales médicos, tecnólogos y legisladores es esencial para establecer un marco normativo sólido y una capacitación adecuada. Conclusión: La tecnología blockchain tiene potencial de revolucionar la gestión de datos en el sector de la salud, mejorando la calidad de la atención médica, empoderando a los usuarios y fomentando la compartición segura de datos. Es necesario un cambio cultural y regulatorio, junto a más evidencia, para concluir sus ventajas frente a las alternativas tecnológicas existentes. Abstract: Introduction: Technological advances continue to transform society, including the health sector. The decentralized and verifiable nature of blockchain technology presents great potential for addressing current challenges in healthcare data management. Discussion: This article reports on how the generalized adoption of blockchain faces important challenges and barriers that must be addressed, such as the lack of regulation, technical complexity, safeguarding privacy, and economic and technological costs. Collaboration between medical professionals, technologists and legislators is essential to establish a solid regulatory framework and adequate training. Conclusion: Blockchain technology has the potential to revolutionize data management in the healthcare sector, improving the quality of medical care, empowering users, and promoting the secure sharing of data, but an important cultural change is needed, along with more evidence, to reveal its advantages in front of the existing technological alternative.

Abstract Background Digital transformation in healthcare and the growth of health data generation and collection are important challenges for the secondary use of healthcare records in the health research field. Likewise, due to the ethical and legal constraints for using sensitive data, understanding how health data are managed by dedicated infrastructures called data hubs is essential to facilitating data sharing and reuse. Methods To capture the different data governance behind health data hubs across Europe, a survey focused on analysing the feasibility of linking individual-level data between data collections and the generation of health data governance patterns was carried out. The target audience of this study was national, European, and global data hubs. In total, the designed survey was sent to a representative list of 99 health data hubs in January 2022. Results In total, 41 survey responses received until June 2022 were analysed. Stratification methods were performed to cover the different levels of granularity identified in some data hubs’ characteristics. Firstly, a general pattern of data governance for data hubs was defined. Afterward, specific profiles were defined, generating specific data governance patterns through the stratifications in terms of the kind of organization (centralized versus decentralized) and role (data controller or data processor) of the health data hub respondents. Conclusions The analysis of the responses from health data hub respondents across Europe provided a list of the most frequent aspects, which concluded with a set of specific best practices on data management and governance, taking into account the constraints of sensitive data. In summary, a data hub should work in a centralized way, providing a Data Processing Agreement and a formal procedure to identify data providers, as well as data quality control, data integrity and anonymization methods.

Background: Digital transformation in healthcare and the growth of health data generation and collection are important challenges for the secondary use of healthcare records in the health research field. Likewise, due to the ethical and legal constraints for using sensitive data, understanding how health data are managed by dedicated infrastructures called data hubs is essential to facilitating data sharing and reuse. Methods: To capture the different data governance behind health data hubs across Europe, a survey focused on analysing the feasibility of linking individual-level data between data collections and the generation of health data governance patterns was carried out. The target audience of this study was national, European, and global data hubs. In total, the designed survey was sent to a representative list of 99 health data hubs in January 2022. Results: In total, 41 survey responses received until June 2022 were analysed. Stratification methods were performed to cover the different levels of granularity identified in some data hubs' characteristics. Firstly, a general pattern of data governance for data hubs was defined. Afterward, specific profiles were defined, generating specific data governance patterns through the stratifications in terms of the kind of organization (centralized versus decentralized) and role (data controller or data processor) of the health data hub respondents. Conclusions: The analysis of the responses from health data hub respondents across Europe provided a list of the most frequent aspects, which concluded with a set of specific best practices on data management and governance, taking into account the constraints of sensitive data. In summary, a data hub should work in a centralized way, providing a Data Processing Agreement and a formal procedure to identify data providers, as well as data quality control, data integrity and anonymization methods. [ABSTRACT FROM AUTHOR]

Aims: This article aims to perform a Systematic Literature Review (SLR) to better understand the structures of different methods, techniques, models, methodologies, and technologies related to provenance data management in health information systems (HISs). The SLR developed here seeks to answer the questions that contribute to describing the results. Method: An SLR was performed on six databases using a search string. The backward and forward snowballing technique was also used. Eligible studies were all articles in English that presented on the use of different methods, techniques, models, methodologies, and technologies related to provenance data management in HISs. The quality of the included articles was assessed to obtain a better connection to the topic studied. Results: Of the 239 studies retrieved, 14 met the inclusion criteria described in this SLR. In order to complement the retrieved studies, 3 studies were included using the backward and forward snowballing technique, totaling 17 studies dedicated to the construction of this research. Most of the selected studies were published as conference papers, which is common when involving computer science in HISs. There was a more frequent use of data provenance models from the PROV family in different HISs combined with different technologies, among which blockchain and middleware stand out. Despite the advantages found, the lack of technological structure, data interoperability problems, and the technical unpreparedness of working professionals are still challenges encountered in the management of provenance data in HISs. Conclusion: It was possible to conclude the existence of different methods, techniques, models, and combined technologies, which are presented in the proposal of a taxonomy that provides researchers with a new understanding about the management of provenance data in HISs. [ABSTRACT FROM AUTHOR]

Aims: This article aims to perform a Systematic Literature Review (SLR) to better understand the structures of different methods, techniques, models, methodologies, and technologies related to provenance data management in health information systems (HISs). The SLR developed here seeks to answer the questions that contribute to describing the results. Method: An SLR was performed on six databases using a search string. The backward and forward snowballing technique was also used. Eligible studies were all articles in English that presented on the use of different methods, techniques, models, methodologies, and technologies related to provenance data management in HISs. The quality of the included articles was assessed to obtain a better connection to the topic studied. Results: Of the 239 studies retrieved, 14 met the inclusion criteria described in this SLR. In order to complement the retrieved studies, 3 studies were included using the backward and forward snowballing technique, totaling 17 studies dedicated to the construction of this research. Most of the selected studies were published as conference papers, which is common when involving computer science in HISs. There was a more frequent use of data provenance models from the PROV family in different HISs combined with different technologies, among which blockchain and middleware stand out. Despite the advantages found, the lack of technological structure, data interoperability problems, and the technical unpreparedness of working professionals are still challenges encountered in the management of provenance data in HISs. Conclusion: It was possible to conclude the existence of different methods, techniques, models, and combined technologies, which are presented in the proposal of a taxonomy that provides researchers with a new understanding about the management of provenance data in HISs.

Information is clearly vital to public health, but the acquisition and use of public health data elicit serious privacy concerns. One strategy for navigating this dilemma is to build 'trust' in institutions responsible for health information, thereby reducing privacy concerns and increasing willingness to contribute personal data. This strategy, as currently presented in public health literature, has serious shortcomings. But it can be augmented by appealing to the philosophical analysis of the concept of trust. Philosophers distinguish trust and trustworthiness from cognate attitudes, such as confident reliance. Central to this is value congruence: trust is grounded in the perception of shared values. So, the way to build trust in institutions responsible for health data is for those institutions to develop and display values shared by the public. We defend this approach from objections, such as that trust is an interpersonal attitude inappropriate to the way people relate to organisations. The paper then moves on to the practical application of our strategy. Trust and trustworthiness can reduce privacy concerns and increase willingness to share health data, notably, in the context of internal and external threats to data privacy. We end by appealing for the sort of empirical work our proposal requires. [ABSTRACT FROM AUTHOR]

Health data integration enables a collaborative utilization of data across different systems. It not only provides a comprehensive view of a patient's health but can also potentially cope with challenges faced by the current healthcare system. In this literature review, we investigated the existing work on heterogeneous health data integration as well as the methods of utilizing the integrated health data. Our search was narrowed down to 32 articles for analysis. The integration approaches in the reviewed articles were classified into three classifications, and the utilization approaches were classified into five classifications. The topic of health data integration is still under debate and problems are far from being resolved. This review suggests the need for a more efficient way to invoke the various services for aggregating health data, as well as a more effective way to integrate the aggregated health data for supporting collaborative utilization. We have found that the combination of Web Application Programming Interface and Semantic Web technologies has the potential to cope with the challenges based on our analysis of the review result. [ABSTRACT FROM AUTHOR]

Background: There are several challenges such as information silos and lack of interoperability with the current electronic medical record (EMR) infrastructure in the Canadian health care system. These challenges can be alleviated by implementing a blockchain-based health care data management solution.Objective: This study aims to provide a detailed overview of the current health data management infrastructure in British Columbia for identifying some of the gaps and inefficiencies in the Canadian health care data management system. We explored whether blockchain is a viable option for bridging the existing gaps in EMR solutions in British Columbia's health care system.Methods: We constructed the British Columbia health care data infrastructure and health information flow based on publicly available information and in partnership with an industry expert familiar with the health systems information technology network of British Columbia's Provincial Health Services Authorities. Information flow gaps, inconsistencies, and inefficiencies were the target of our analyses.Results: We found that hospitals and clinics have several choices for managing electronic records of health care information, such as different EMR software or cloud-based data management, and that the system development, implementation, and operations for EMRs are carried out by the private sector. As of 2013, EMR adoption in British Columbia was at 80% across all hospitals and the process of entering medical information into EMR systems in British Columbia could have a lag of up to 1 month. During this lag period, disease progression updates are continually written on physical paper charts and not immediately updated in the system, creating a continuous lag period and increasing the probability of errors and disjointed notes. The current major stumbling block for health care data management is interoperability resulting from the use of a wide range of unique information systems by different health care facilities.Conclusions: Our analysis of British Columbia's health care data management revealed several challenges, including information silos, the potential for medical errors, the general unwillingness of parties within the health care system to trust and share data, and the potential for security breaches and operational issues in the current EMR infrastructure. A blockchain-based solution has the highest potential in solving most of the challenges in managing health care data in British Columbia and other Canadian provinces. [ABSTRACT FROM AUTHOR]

Data processing agreements in health data management are laid out by organisations in monolithic "Terms and Conditions" documents written in natural legal language. These top-down policies usually protect the interest of the service providers, rather than the data owners. They are coarse-grained and do not allow for more than a few opt-in or opt-out options for individuals to express their consent on personal data processing, and these options often do not transfer to software as they were intended to. In this paper, we study the problem of health data sharing and we advocate the need for individuals to describe their personal contract of data usage in a formal, machine-processable language. We develop an application for sharing patient genomic information and test results, and use interactions with patients and clinicians in order to identify the particular peculiarities a privacy/policy/consent language should offer in this complicated domain. We present how Semantic Web technologies can have a central role in this approach by providing the formal tools and features required in such a language. We present our ongoing approach to construct an ontology-based framework and a policy language that allows patients and clinicians to express fine-grained consent, preferences or suggestions on sharing medical information. Our language offers unique features such as multi-party ownership of data or data sharing dependencies. We evaluate the landscape of policy languages from different areas, and show how they are lacking major requirements needed in health data management. In addition to enabling patients, our approach helps organisations increase technological capabilities, abide by legal requirements, and save resources. [ABSTRACT FROM AUTHOR]