Health information management systems and practices in conflict-affected settings: the case of northwest Syria.

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.

Blockchain en salud: transformando la seguridad y la gestión de datos clínicos / Blockchain in health: Transforming security and clinical data management

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. (AU)

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. (AU)

[Blockchain in health: Transforming security and clinical data management]. / Blockchain en salud: transformando la seguridad y la gestión de datos clínicos.

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.

Health data hubs: an analysis of existing data governance features for research.

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.

Provenance Data Management in Health Information Systems: A Systematic Literature Review.

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.

Trust and The Acquisition and Use of Public Health Information.

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.

Health Data Management Practice and Associated Factors Among Health Professionals Working at Public Health Facilities in Resource Limited Settings.

BACKGROUND: Despite the vast amount of resources invested in the development of health information systems, health professionals in developing countries are still suffering from lack of adequate skill to perform health data management activities. There is a lack of sound evidence to overcome health data management challenges in this setting. This study aimed to assess health data management practice and its associated factors among health professionals working at public health facilities in North Wollo Zone, Northeast Ethiopia. METHODS: A quantitative cross-sectional study was conducted at public health facilities in North Wollo Zone, Northeast Ethiopia from March 2 to April 15, 2020. A total of 715 health professionalswere selected using a stratified random sampling technique. EpiData version 4.6 and STATA version 15 were used for data entry and analysis, respectively. Descriptive statistics were computed. Multi-variable logistic regression analyses techniques were carried out to show the association between explanatory and outcome variables. Odd ratio at 95% confidence level was used to describe the strength of association. RESULTS: A total of 643 health professionals participated in this study. The response rate was 90%. Among them, 56.1% (95% CI: 52.3%-59.9%) demonstrated good data management practice. Working in health center [AOR=1.31 (95% CI: 1.853, 2.003)], having knowledge on data management [AOR=3.74 (95% CI: 2.454, 5.713)], favorable attitude toward data management [AOR=2.64 (95% CI: 1.746, 3.976)], high competency level on data management tasks [AOR=3.12 (95% CI: 1.873, 5.197)], friendliness of data management format [AOR=2.26 (95% CI: 1.478, 3.454)], supervision [AOR=1.78 (95% CI: 1.153, 2.745)] and training [AOR=1.84 (95% CI: 1.115, 3.022)] were significantly associated with good practice of health data management. CONCLUSION: Health data management practices of health professionals' were found to be inadequate. Capacity building to enhance health professionals' data management knowledge, attitude and their competency level, providing continuous supportive supervision, designing friendly data management format, providing comprehensive data management training are necessary measures to improve data management practice in this study setting.

Proposed Implementation of Blockchain in British Columbia's Health Care Data Management.

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.

A literature review of current technologies on health data integration for patient-centered health management.

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.

Taming Performance Variability of Healthcare Data Service Frameworks with Proactive and Coarse-Grained Memory Cleaning.

This article explores the performance optimizations of an embedded database memory management system to ensure high responsiveness of real-time healthcare data frameworks. SQLite is a popular embedded database engine extensively used in medical and healthcare data storage systems. However, SQLite is essentially built around lightweight applications in mobile devices, and it significantly deteriorates when a large transaction is issued such as high resolution medical images or massive health dataset, which is unlikely to occur in embedded systems but is quite common in other systems. Such transactions do not fit in the in-memory buffer of SQLite, and SQLite enforces memory reclamation as they are processed. The problem is that the current SQLite buffer management scheme does not effectively manage these cases, and the naïve reclamation scheme used significantly increases the user-perceived latency. Motivated by this limitation, this paper identifies the causes of high latency during processing of a large transaction, and overcomes the limitation via proactive and coarse-grained memory cleaning in SQLite.The proposed memory reclamation scheme was implemented in SQLite 3.29, and measurement studies with a prototype implementation demonstrated that the SQLite operation latency decreases by 13% on an average and up to 17.3% with our memory reclamation scheme as compared to that of the original version.

Patient-Centered Mobile Health Data Management Solution for the German Health Care System (The DataBox Project).

This article describes the DataBox project which offers a perspective of a new health data management solution in Germany. DataBox was initially conceptualized as a repository of individual lung cancer patient data (structured and unstructured). The patient is the owner of the data and is able to share his or her data with different stakeholders. Data is transferred, displayed, and stored online, but not archived. In the long run, the project aims at replacing the conventional method of paper- and storage-device-based handling of data for all patients in Germany, leading to better organization and availability of data which reduces duplicate diagnostic procedures, treatment errors, and enables the training as well as usage of artificial intelligence algorithms on large datasets.

Towards Safe and Efficient Child Primary Care - Gaps in the Use of Unique Identifiers in Europe.

In order to provide for best possible child health care, timely access to all relevant medical data is of vital importance. The aim of this study is to investigate the use of unique identifiers, a key instrument in this regard, in the countries of Europe. A survey was carried out in all 28 European Member States plus 2 European Economic Area countries in 2015, and refreshed in 2016. In 23 countries unique identifiers are used to link children's health records. Five countries indicated they currently do not link child health records, and two have no such plans. There is variety as regards the type of number and the issuing process.