Dataset Information

Recommended configuration for personal health records by standardized data item sets for diabetes mellitus and associated chronic diseases: A report from Collaborative Initiative by six Japanese Associations.

ABSTRACT: It is expected that a large amount of data related to diabetes and other chronic diseases will be generated. However, databases constructed without standardized data item sets can be limited in their usefulness. To address this, the Collaborative Committee of Clinical Informatization in Diabetes Mellitus was established in 2011 by the Japan Diabetes Society and Japan Association for Medical Informatics. The committee has developed core item sets and self-management item sets for diabetes mellitus, hypertension, dyslipidemia, and chronic kidney disease in collaboration with the Japanese Society of Hypertension, Japan Atherosclerosis Society, Japanese Society of Nephrology, and Japanese Society of Laboratory Medicine, as well as a mapping table that aligns the self-management item sets with the Japanese standardized codes for laboratory testing. The committee also determined detailed specifications for implementing the four self-management item sets in personal health record (PHR) applications to facilitate risk stratification, the generation of alerts using information and communications technology systems, the avoidance of data input errors, and the generation of reminders to input the self-management item set data. The approach developed by the committee may be useful for combining databases for various purposes (such as for clinical studies, patient education, and electronic medical record systems) and for facilitating collaboration between PHR administrators.

SUBMITTER: Nakashima N

PROVIDER: S-EPMC6497609 | biostudies-literature | 2019 May

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Recommended configuration for personal health records by standardized data item sets for diabetes mellitus and associated chronic diseases: A report from Collaborative Initiative by six Japanese Associations.

Nakashima Naoki N Noda Mitsuhiko M Ueki Kohjiro K Koga Tatsuhiko T Hayashi Michio M Yamazaki Katsuya K Nakagami Tomoko T Ohara Makoto M Gochi Akira A Matsumura Yasushi Y Kimura Michio M Ohe Kazuhiko K Kang Dongchon D Toya Yoshiyuki Y Yamagata Kunihiro K Yokote Koutaro K Ikeda Shunya S Mitsutake Naohiro N Yamamoto Ryuichi R Tanizawa Yukio Y

Journal of diabetes investigation 20190425 3

It is expected that a large amount of data related to diabetes and other chronic diseases will be generated. However, databases constructed without standardized data item sets can be limited in their usefulness. To address this, the Collaborative Committee of Clinical Informatization in Diabetes Mellitus was established in 2011 by the Japan Diabetes Society and Japan Association for Medical Informatics. The committee has developed core item sets and self-management item sets for diabetes mellitu ...[more]

PMID: 31020808

Similar Datasets

Project description:BackgroundBlockchain technology has the potential to enable more secure, transparent, and equitable data management. In the health care domain, it has been applied most frequently to electronic health records. In addition to securely managing data, blockchain has significant advantages in distributing data access, control, and ownership to end users. Due to this attribute, among others, the use of blockchain to power personal health records (PHRs) is especially appealing.ObjectiveThis review aims to examine the current landscape, design choices, limitations, and future directions of blockchain-based PHRs.MethodsAdopting the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) guidelines, a cross-disciplinary systematic review was performed in July 2020 on all eligible articles, including gray literature, from the following 8 databases: ACM, IEEE Xplore, MEDLINE, ScienceDirect, Scopus, SpringerLink, Web of Science, and Google Scholar. Three reviewers independently performed a full-text review and data abstraction using a standardized data collection form.ResultsA total of 58 articles met the inclusion criteria. In the review, we found that the blockchain PHR space has matured over the past 5 years, from purely conceptual ideas initially to an increasing trend of publications describing prototypes and even implementations. Although the eventual application of blockchain in PHRs is intended for the health care industry, the majority of the articles were found in engineering or computer science publications. Among the blockchain PHRs described, permissioned blockchains and off-chain storage were the most common design choices. Although 18 articles described a tethered blockchain PHR, all of them were at the conceptual stage.ConclusionsThis review revealed that although research interest in blockchain PHRs is increasing and that the space is maturing, this technology is still largely in the conceptual stage. Being the first systematic review on blockchain PHRs, this review should serve as a basis for future reviews to track the development of the space.

Project description:BackgroundInformation and communication technology (ICT) has transformed the health care field worldwide. One of the main drivers of this change is the electronic health record (EHR). However, there are still open issues and challenges because the EHR usually reflects the partial view of a health care provider without the ability for patients to control or interact with their data. Furthermore, with the growth of mobile and ubiquitous computing, the number of records regarding personal health is increasing exponentially. This movement has been characterized as the Internet of Things (IoT), including the widespread development of wearable computing technology and assorted types of health-related sensors. This leads to the need for an integrated method of storing health-related data, defined as the personal health record (PHR), which could be used by health care providers and patients. This approach could combine EHRs with data gathered from sensors or other wearable computing devices. This unified view of patients' health could be shared with providers, who may not only use previous health-related records but also expand them with data resulting from their interactions. Another PHR advantage is that patients can interact with their health data, making decisions that may positively affect their health.ObjectiveThis work aimed to explore the recent literature related to PHRs by defining the taxonomy and identifying challenges and open questions. In addition, this study specifically sought to identify data types, standards, profiles, goals, methods, functions, and architecture with regard to PHRs.MethodsThe method to achieve these objectives consists of using the systematic literature review approach, which is guided by research questions using the population, intervention, comparison, outcome, and context (PICOC) criteria.ResultsAs a result, we reviewed more than 5000 scientific studies published in the last 10 years, selected the most significant approaches, and thoroughly surveyed the health care field related to PHRs. We developed an updated taxonomy and identified challenges, open questions, and current data types, related standards, main profiles, input strategies, goals, functions, and architectures of the PHR.ConclusionsAll of these results contribute to the achievement of a significant degree of coverage regarding the technology related to PHRs.

Project description:BackgroundLongitudinal personal health record (PHR) provides a foundation for managing patients' health care, but we do not have such a system in the U.S. except for the patients in the Department of Veterans Affairs. Such a gap exists mainly in the rest of the U.S. by the fact that patients' electronic health records are scattered across multiple health care facilities and often not shared due to privacy, security, and business interests concerns from both patients and health care organizations. In addition, patients have ethical concerns related to consent. To patients, data security, privacy, and consent are based on trustfulness, rather than patients' engagement in ensuring only authorized people can view their PHRs with patient-managed granularity. Resolving these challenges is an important step in making longitudinal PHR useful for patient care.ObjectiveThis research aims to design and implement a blockchain-enabled sharing platform prototype for PHR with desired patient-controlled data security, privacy, and consent granularity.MethodsBuilt upon our prior work of a blockchain-enabled access control (BAC) model, we design a blockchain-enabled sharing platform for PHR with patient-controlled security, privacy, and consent granularity. We further implement the construct by building a prototypical platform among a patient and two typical health care organizations. Health organizations that hold the patient's electronic health records can join the platform with trust based on the validation from the patient. The mutual trust can be established through a rigorous validation process by both the patient and the built-in Hyperledger Fabric blockchain consensus mechanism.ResultsWe proposed a system trusted by patients and health care providers and constructed a Web-based PHR sharing platform with patient-controlled security, privacy, and consent granularity. We analyzed the system scalability in three aspects and showed millisecond range of performance when simultaneously changing access permissions on hundreds of PHRs. Consent, security and privacy of the model are ensured by the merits of the BAC model. We discovered the current blockchain model limits the system scalability due to using a non-graphical database. A new graphical database is suggested for future improvements.ConclusionsIn this research, we report a solution to electronically sharing and managing patients' electronic health records originating from multiple organizations, focusing on privacy, security, and granularity control of consent in the U.S. Specifically, the system protects data security and privacy, and provides auditability, scalability, distributedness, patient consent autonomy, and zero-trust capabilities. The prototypical instantiation of the designed model suggested the feasibility of combining emerging blockchain technology with next generation access control model to tackle a longstanding longitudinal PHR problem.

Dataset Information

Recommended configuration for personal health records by standardized data item sets for diabetes mellitus and associated chronic diseases: A report from Collaborative Initiative by six Japanese Associations.

Publications

Recommended configuration for personal health records by standardized data item sets for diabetes mellitus and associated chronic diseases: A report from Collaborative Initiative by six Japanese Associations.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets