HealthLink: A Decentralized Health Data Management System using Merkle Tree-Based Approach

BackgroundHealth data is one of the most valuable assets in health service delivery yet one of the most underutilized in especially low-income countries. Health data is postulated to improve health service delivery through availing avenues for optimal patient management, facility management, and public health surveillance and management. Advancements in information technology (IT) will further increase the value of data, but will also call for capacity readiness especially in rural health facilities.We aimed to understand the current knowledge, attitudes and practices of health workers towards health data management and utilization.MethodsWe conducted key informant interviews (KII) for health workers and data staff, and focus group discussions (FGD) for the village health teams (VHTs). We used both purposive and convenience sampling to recruit key informants, and convenience sampling to recruit village health teams. Interviews and discussions were audiotaped and transcribed verbatim. We manually generated the codes and we used thematic analysis to identify the themes. We also developed a reflexivity journal.ResultsWe conducted a total of 6 key informant interviews and 3 focus group discussions of 29 participants. Our analysis identified 7 themes: One theme underscored the health workers’ enthusiasm towards an optimal health data management setting. The rest of the six themes resonated around working remedies to the systemic challenges that grapple health data management and utilization at facilities in rural areas. These include: Building human resource capacity; Equipping the facilities; Improved coordination with partners; Improved data quality assurance; Promotion of a pull supply system and Reducing information relay time.ConclusionOur findings reveal a plethora of systematic challenges that have persistently undercut optimal routine health data management and utilization in rural areas and suggest possible working remedies. Health care workers express enthusiasm towards an optimal health management system but this isn’t matched by their technical capacity, facility readiness, systems and policy willingness. There is an urgent need to build rural lower facilities’ capacity in health data management and utilization which will also lay a foundation for exploitation of information technology in health.

In recent years, healthcare is evolving to meet the needs of a growing and ageing population. To support better and more reliable care, a comprehensive and up-to-date Personal Health Record (PHR) is essential. Ideally, the PHR should contain all health-related information about an individual and be available for sharing with healthcare institutions. However, due to interoperability issues of the medical and fitness devices, most of the times, the PHR only contains the same information as the patient Electronic Health Record (EHR). This results in lack of health-related information (e.g., physical activity, working patterns) essential to address medical conditions, support prescriptions, and treatment follow-up. This paper introduces the B-Health IoT Box, a fog IoT computing framework for eHealth interoperability and data collection that enables seamless, secure integration of health and contextual data into interoperable health records. The system was deployed in real-world settings involving over 4500 users, successfully collecting and transmitting more than 1.5 million datasets. The validation shown that data was collected, harmonized, and properly stored in different eHealth platforms, enriching data from personal EHR with mobile and wearable sensors data. The solution supports real-time and near real-time data collection, fast prototyping, and secure cloud integration, offering a modular, standards-compliant gateway for digital health ecosystems. The health and health-related data is available in FHIR format enabling interoperable eHealth ecosystems, and better equality of access to health and care services.

Blockchain technology is a forefront innovation that drives multi-user data accessibility with patient ownership, traceability, transparency, security, and privacy protection. However, optimizing blockchain latency and its relationship with security remains underexplored in health data management. This study aims to optimize security and latency in healthcare data management through a novel Blockchain-based framework. The objectives include: (1) developing an innovative EMR management architecture that integrates key stakeholders using Blockchain and smart contracts, (2)creating a multi-objective optimization model for Hyperledger Fabric Blockchain in medical health management, and (3)implementing and evaluating advanced optimization techniques using block Size and consensusLevels as key decision variables. This study bridges the gap by proposing a novel methodology that integrates the Hyperledger Fabric framework with smart contracts to optimize security and storage in health data systems. A key contribution of this research is the development of a multi-objective optimization model employing two advanced non-dominated sorting genetic algorithms, NSGA-II and NSGA-III, to configure system parameters such as blockSize and consensusLevels. Evaluation results show that NSGA-II outperforms NSGA-III, achieving 50% higher Hyper-volume and five distinct non-dominated solutions compared to two, demonstrating its superior ability to balance conflicting objectives and provide optimal configurations. The proposed framework tackles critical challenges in health data interoperability, privacy, and security while ensuring robust, patient-centric data management. By enabling multi-user access, enhanced security, and optimized storage, this work advances Blockchain’s role in healthcare and positions the industry for the Digital Health era. Future work will expand objectives and enable real-time deployment.

Using HL7 FHIR to achieve interoperability in patient health record.

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ObjectiveTransitioning from digital health applications to digital health ecosystems, leveraging the advances in technologies and informatics, could be the next revolution in digital health. This includes offering centralized access to various health services and improving citizens’ well-being, delivery, clinical processes, and data management. However, a limited understanding of citizens may impede adaptation. Therefore, this study investigates citizens’ attitudes within digital health ecosystems, differentiated by their characteristics, to support health service-providers and governmental policymakers in establishing user-centered solutions.MethodsThis study follows a three-step sequential mixed method methodology: (1) a literature review. (2) Qualitative thematic analyses based on semi-structured qualitative interviews. (3) Quantitative analyses based on a web-survey (descriptive statistics, one-way analysis of variances, Tukey-honestly, and Cohen's d tests).ResultsN = 15 citizens were interviewed and n = 1289 responded to the web-survey, to our knowledge the largest survey on this topic. Citizens desire a more convenient management of health services and data (M = 5.2, SD = 1.59). Services with peer-to-peer interactions (M = 3.7, SD = 1.81) and lower involvement of health professionals (M = 3.8, SD = 1.75) are less demanded. Data protection is critical (M = 6.2, SD = 1.23). Public payers are mandated as orchestrators (M = 4.3, SD = 1.99), while private companies receive lower acceptance (M = 3.0, SD = 1.42).ConclusionsHealth service-providers could follow a three-staged approach to establish digital health ecosystems: (1) Increasing the convenience for citizens by enabling online management of health services and data. (2) Extending the citizen–healthcare provider partnership through online interactions. (3) Fostering preventative behaviors and quicker recovery by personalizing health services and interactions. Governmental policymakers should integrate an electronic health record.

Problem: "Does the use of PHR improve the health of their users?" Background: The Personal Health Record (PHR) is an electronic application through which individuals can manage and share their lifelong health information. An immediate source of reliable information concerning the past health conditions of the patient might enable the physician to make more accurate diagnosis, preventing medical error. Although PHRs can be shared with health providers, they are used by the patient for self-care and record keeping, matching population’s growing demand to play an active role in their health care. Aim: Our study aims to understand the impact of PHRs on patient’s health. Methods: A systematic review was performed. The unit of analysis was original articles evaluating the impact of PHRs. The sources of information were Pubmed, ISI and Scopus. A hand search was not performed. The articles were analysed considering the study type; PHR’s characteristics; patient’s description, health status, opinion and response; the costs and doctor-patient communication. We set our inclusion and exclusion criteria. The inclusion criteria were articles that evaluated the benefits of PHRs in health care; their effect on certain diseases or populations; their acceptance among populations; articles that reported PHRs as a tool for the physician or evaluated them as a bridge between patient and physician. Exclusion criteria: articles dated before 1990, with no available 2 abstract, not written in English or Portuguese, about electronic systems of health care providers or electronic health records. From the 698 articles, only 158 full-texts fulfilled the inclusion and exclusion criteria. They were read and confronted with our variables. We got results from 44 papers. SPSS® was used to perform all needed statistical analysis. Results: We obtained the frequencies of all variables, performed one smaple t-tests and chi-square tests. We considered as statistically significant results with p<0.05. We observed that this is a topic increasingly discussed in the scientific community, as the number of papers increased exponentially since 2005. Internet PHRs are the most used, followed by paper-based and USB-pen ones. Most PHRs were supported by medical. Many PHRs are used in the treatment of chronic diseases. PHRs improved the use of medication and patient/doctor relation. Conclusion: The results obtained allow us to conclude that PHRs, in fact, improve the health of their users, confirming our belief that further research would be extremely relevant. KEY-WORDS Personal Health Records; Personal Child Health Records; PHR; Health Impact.

This poster describes a method to prepare noise and health data from wearable technology for standardized representation in the electronic personal health record thus enabling individuals to identify noise-related health risks. Using a case study approach, the authors demonstrate transformation of data to the Omaha System standardized terminology in order to depict the data graphically in a personal health record.

Putting patients in control of their records is one way of promoting patient centred care and patients with chronic health problems may benefit most from personal health records (PHRs). Glaucoma management is often complicated by incomplete understanding and poor adherence to treatment, two areas which a PHR may help to address. This study aimed to discover what patients with glaucoma think about PHRs and what type of information a glaucoma PHR should contain. A consultation exercise using a focus group approach involving 71 participants was undertaken to discuss if a PHR would be useful and what it would be like. Narrative data were collected through written notes and an online forum in addition to transcripts of the focus group feedback session and individual interviews. Recordings were transcribed and analysed with simple thematic analysis facilitated by NVivo software (www.qsrinternational.com). The consultation exercise indicated enthusiasm for PHRs. Views varied on the best format, some participants strongly favoured electronic records and others preferred a low-tech, paper based format. A comprehensive dataset of 24 items was developed which highlighted areas which are not covered by existing guidance to developers. A model for how PHRs may be useful as an education tool in clinical practice was devised. Asking patients what they thought about a glaucoma PHR raised challenging questions and adds perspective to predominantly clinician led development. Listening and responding to such viewpoints is fundamental to developing more patient centred PHRs which may act both as health record and self-care educational tool to promote more holistic, efficient glaucoma care.

Health information technology, applied to electronic health record (EHR), has evolved with the adoption of standards for defining patient health records. However, there are many standards for defining such data, hindering communication between different healthcare providers. Even with adopted standards, patients often need to repeatedly provide their health information when they are taken care of at different locations. This problem hinders the adoption of personal health record (PHR), with the patients' health records under their own control. Therefore, the purpose of this paper is to propose an interoperability model for PHR use. The methodology consisted prototyping an application model named OmniPHR, to evaluate the structuring of semantic interoperability and integration of different health standards, using a real database from anonymized patients. We evaluated health data from a hospital database with 38645 adult patients' medical records processed using different standards, represented by openEHR, HL7 FHIR, and MIMIC-III reference models. OmniPHR demonstrated the feasibility to provide interoperability through a standard ontology and artificial intelligence with natural language processing (NLP). Although the first executions reached a 76.39% F1-score and required retraining of the machine-learning process, the final score was 87.9%, presenting a way to obtain the original data from different standards on a single format. Unlike other models, OmniPHR presents a unified, structural semantic and up-to-date vision of PHR for patients and healthcare providers. The results were promising and demonstrated the possibility of subsidizing the creation of inferences rules about possible patient health problems or preventing future problems.

An Analysis of the Adoption of Digital Health Records under Switching Costs

Design of security systems for Personal Health Record (PHR) continuous to remain an active research area. Machine Learning and Big data on health care are used for prediction of data or diseases. But there is no traditional system which id used to secure the data and provide emergency access in emergency conditions. PHR is a private and secure record of any individual through which an individual could access, manage and share his/her health data. In hospital management systems, there is an opportunity of sharing PHRs by the hospitals, doctors or workers for his/her private profit so there is no secure record management for restricting the unauthorized access to providing details in emergency circumstances for accessing his/her PHR. The major goal of this project is to provide security to clinical data by a secure record management ledger and provide different levels of abstraction with limited access permissions using some granular access rules on smart contracts on PHR using blockchain. For emergency access we gave some permissioned access rules to the PHR dependent on emergency PHR information that patient can control access for the record using grant and revoke permissions to any doctor. We analyse the proposed framework's overall performance using Hyperledger fabric which is permissioned block chain dependent on security, privacy and accessibility and response time.

Health Systems Need to Transform Data Collection to Advance Health Equity.

Increasingly, across geographies, citizens are requiring access to and control of their health data. This paper examines the "Logging Component" proposed by the European Health Data Space (EHDS) regulation and its crucial role in facilitating secure and transparent access to electronic health records (EHR) and health data. We analysed the proposal for the five elements of the Logging Component (LC): identification of data accessors, identification of data subjects, categorisation of accessed data, temporal logging, and data origin tracking. Explored how these elements contribute towards enhanced accountability and compliance in health data management. We experimented with distributed ledger technology (DLT) to support the "data origin tracking element", reaching the demonstration level which can be presented. We used hybrid DLT to develop a system for immutable storage of access logs, and for using smart contracts to maintain a self-governing decentralised access control list (ACL) directly integrated with EHR and PHR systems. We found that the LC is more than a regulatory requirement. It can serve as a framework for the integration of advanced technologies, e.g. DLT and others, increasingly mature and potentially foundational to building new networks of trust among stakeholders, while ensuring data privacy in cross-border and intra-border healthcare scenarios. The study also identified shortcomings of the LC, such as the absence of "purpose logging", which was conceptualised and proposed. This study contributes to the understanding of how logging mechanisms can enhance transparency and accountability in electronic health record systems within the European healthcare landscape, but with potential usefulness for the "Global EHR". In conclusion, our findings suggest that the successful implementation of the five elements of the Logging Component are mandatory and can benefit from mature advance technologies, but the sixth element proposed by us would be critical for achieving the EHDS's broader objectives of harmonised health data sharing in Europe and beyond while maintaining robust security standards.

Healthcare providers need to communicate and exchange the clinical and administrative data from Electronic Health Records of patients. The Health Insurance Portability and Accountability Act (HIPAA) of 1996 requires the safeguarding and protection of Electronic Health Records when in transit and in storage. This paper presents a solution to protect Electronic Health Records in both states, in transit and at rest. Our secure data container guarantees data confidentiality and integrity and supports different data formats, including text and images. It can work in environments with limited Internet connectivity, which is important at times of disease pandemics or natural disasters. The potential benefit of this solution for healthcare providers would allow emailing data to patients in the form of our data container without using a HIPAA-compliant email server. This technology supports the ability to send and receive medical record documents, for a single encounter or encounters related to a condition, (1) allowing patient to download and keep their personal health record; (2) sharing continuity of care information with a provider referral to ensure medication reconciliation, for instance, with providers who are outside the information exchange network; and (3) delivering medical records securely to an insurance company who requires notes for a submitted claim. To address the problem of clinical and administrative data exchange between different healthcare providers across multiple networks, states and countries, our methodology allows patients to download and store their Electronic Health Records locally.