CN110993120A - Rare disease medical data integration system based on Internet - Google Patents
Rare disease medical data integration system based on Internet Download PDFInfo
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- CN110993120A CN110993120A CN201911217706.2A CN201911217706A CN110993120A CN 110993120 A CN110993120 A CN 110993120A CN 201911217706 A CN201911217706 A CN 201911217706A CN 110993120 A CN110993120 A CN 110993120A
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Abstract
The invention discloses an internet-based rare disease medical data integration system which comprises a unified identity authentication authorization unit, a rare disease metadata management subsystem, a rare disease type management and queue management subsystem, a rare disease self-defined form management subsystem, a rare disease knowledge base management subsystem, a rare disease case entry subsystem and a rare disease phenotype information and genomics information-based decision analysis platform. The invention effectively collects, arranges, classifies, summarizes and collaboratively consults medical data information of rare diseases, establishes an information management system which is covered comprehensively, enables the medical data of rare diseases to be covered by the Internet technology after technical statistics and analysis, and provides all-round clinical treatment for patients and positive diagnosis reference for medical institutions and professional doctors.
Description
Technical Field
The invention relates to the technical field of medical information internet, in particular to an internet-based rare disease medical data integration system, equipment and a computer readable medium.
Background
The rare diseases refer to diseases with extremely low incidence rate, and according to the definition of the world health organization, the rare diseases refer to the diseases with the sick people accounting for 0.65-1 per mill of the general population. Many rare diseases are genetically caused and are generally chronic, progressive, degenerative and life threatening. Patients affected by rare diseases often suffer from a variety of attendant medical complications and present with a variety of symptomatic deformities. For rare diseases, the assessment of malformations by experienced experts is often a key factor in identifying rare diseases, and diagnosis and corresponding treatment planning by combining phenotypic information and genetic data information are often needed.
Although the incidence rate of the rare diseases is not high, China is a large population country, the number of the rare diseases is not small under the condition of a huge population base, and the total number of the population reaches tens of millions according to preliminary statistics. At present, the diagnosis of the rare diseases in China is mainly focused on a few hospitals in the first-line large city, and the rare patients are distributed all over the country. Patients in various places need to seek medical advice step by step and roll over for multiple places to reach a large hospital in the same line for diagnosis and treatment, which greatly delays the best treatment opportunity and causes huge economic and mental burden to the patients and families.
Moreover, in the rare disease diagnosis process, hospitals often need to provide partial diagnosis records and gene samples of patients to gene testing companies of third parties for analysis and diagnosis, the third party testing companies return a paper report to the hospitals, doctors often have various questions about the diagnosis report, such as incorrect or incomplete phenotype sorted from the diagnosis records by the third party testing companies, insufficient match between the pathogenic genes and the phenotype observed by the doctors, and the like. Communication with a third-party detection company is required again, and the diagnosis time of the patient is prolonged.
Due to the rarity of the disease, the scarcity of experienced specialists, and the complexity of clinical diagnosis, it is often not possible to properly and fully train a large number of physicians distributed throughout the world with a lack of relevant awareness, knowledge, and experience.
Meanwhile, with the increasingly accelerated medical informatization construction, the types and scales of information such as medical data are increasing, and in the clinical diagnosis process, the medical data information includes the following types: the first is a basic knowledge base, which refers to the 'static' rule knowledge of reasonable medicine, medical formula, medical term set, etc.; the second is a clinical diagnosis knowledge base, which is formed by continuous manual summarization and comprises clinical paths, clinical guidelines, a disease diagnosis and treatment knowledge base and the like; thirdly, reference is needed to be provided by reference documents, particularly domestic and foreign reference documents for diagnosis and treatment of rare diseases; and fourthly, mining the formed knowledge from historical cases. However, some of the data belong to large files and some belong to small files, and in the face of the growing mass of medical data, how to better store and facilitate the subsequent efficient analysis and use is also a difficult problem.
At present, most of domestic medical research institutions establish a system for a certain rare disease independently, the system mostly adopts a C/S system architecture, data among the research institutions form data islands, the same rare disease research data is scattered in different medical institutions and cannot form a large-scale sample, multi-center management cannot be realized, and related operations such as coordination work, case sharing and the like among different medical institutions cannot be realized.
Therefore, how to use computer software, hardware, network communication equipment and other cooperative equipment to collect, arrange, classify, summarize and collaborate the medical data information of rare diseases, and establish a comprehensive coverage information management system, so that the medical data of rare diseases are covered by the internet technology after technical statistics and analysis, and the comprehensive clinical treatment is provided for patients, and meanwhile, positive diagnosis reference is provided for medical institutions and professional doctors, which is a technical problem to be solved by technical personnel in the field.
Disclosure of Invention
In view of the above, embodiments of the present specification provide an internet-based rare disease medical data integration system, method, device and computer-readable medium, which are used to solve the problems of low efficiency of rare disease diagnosis in the prior art.
The invention provides an internet-based rare disease medical data integration system which comprises a unified identity authentication authorization unit, a rare disease metadata management subsystem, a rare disease type management and queue management subsystem, a rare disease self-defined form management subsystem, a rare disease knowledge base management subsystem, a rare disease case entry subsystem and a rare disease phenotype information and genomics information-based decision analysis platform.
Furthermore, the unified identity authentication authorization unit comprises a single sign-on module, an identity management module, an authorization management module and a security audit module; the single sign-on module is used for different users to adopt different sign-on windows; the identity management module is used for managing the maintenance of user information, department information, role information, an information system and user and role relationship information and realizing the flow management of the digital identity; the authorization management module provides information resources authorized to be accessed by the user according to the identity authentication result of the user and the requirements of an authorization management model and a strategy; the security audit module is used for comprehensively recording and monitoring all login authentication operations and authorized access behaviors of the user, and ensuring that all operations are in a controllable and auditable state.
Further, the rare disease metadata management subsystem is used to provide analyzable metadata management regarding the composition of a certain rare disease.
Further, the metadata is an indivisible data item that can describe a particular rare disease species, the metadata including public metadata and private metadata.
Further, the public metadata includes basic information of a patient, and the private metadata corresponds to the public metadata.
Further, the rare disease category management and queue management subsystem is used for managing the disease categories of the rare diseases and managing different queues of the same disease category.
Further, the system can manage the research form of the rare disease species.
Further, the rare disease knowledge base management subsystem can manage knowledge base information of the rare disease.
Further, the rare disease case entry subsystem can manage the rare disease entered case information.
Furthermore, the rare disease phenotype information and genomics information based decision analysis platform realizes capturing of rare disease phenotype information data and genomics information data through integrated data warehouse docking, preprocesses the data, and provides quantitative data and predicts the disease risk of a certain rare disease for the decision analysis of the rare disease by using the data drilling and report displaying functions of a BI tool.
Meanwhile, the invention also provides an internet-based rare disease medical data integration device, which comprises: a processor; a memory for storing executable instructions of the processor; wherein the processor is configured to perform the system described above via execution of the executable instructions.
The present invention also provides a computer readable medium for storing computer readable instructions which, when executed, implement the system described above.
The invention has the beneficial effects that: the embodiment provided by the invention effectively collects, arranges, classifies, summarizes and collaboratively consults medical data information of rare diseases, establishes an information management system which is comprehensively covered, enables the medical data of rare diseases to be covered by the Internet technology after technical statistics and analysis, and provides all-round clinical treatment for patients and positive diagnosis reference for medical institutions and professional doctors.
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In order to more clearly illustrate the technical solutions of the embodiments of the present invention, the drawings needed to be used in the embodiments will be briefly described below, it should be understood that the following drawings only illustrate some embodiments of the present invention and therefore should not be considered as limiting the scope, and for those skilled in the art, other related drawings can be obtained according to the drawings without inventive efforts.
Fig. 1 is a schematic architecture diagram of an internet-based rare medical data integration system provided in an embodiment of the present invention.
Detailed Description
The following description of the embodiments of the present invention is provided to facilitate the understanding of the present invention by those skilled in the art, but it should be understood that the present invention is not limited to the scope of the embodiments, and it will be apparent to those skilled in the art that various changes may be made without departing from the spirit and scope of the invention as defined and defined in the appended claims, and all matters produced by the invention using the inventive concept are protected.
The facility operation environment of the system of the invention is composed of an application program server, a database layer and a basic server layer, the system adopts a B/S architecture, follows a J2EE multilayer architecture mode, and is specifically realized by a presentation layer, a service layer and a persistence layer, thereby ensuring the portability of the system and enhancing the compatibility and expansibility of the system. The application program server is a basic environment for the operation of the whole system module, and integrates the functions of cache management, thread management, connection pool management, safety authentication management and the like. Due to the system independence and standardization of J2EE, the system of the present invention can be ported between different application servers. The database layer is the database foundation of the system, and the business processes are all performed around the data. Due to the adoption of a standard data interface, the system can run on different database systems. The basic server layer provides basic guarantee for system operation, and the cross-platform property of J2EE ensures that the system can be safely transplanted among different operating systems.
The invention provides an architecture schematic diagram of an internet-based rare disease medical data integration system, which is shown in figure 1 and comprises a unified identity authentication authorization unit, a rare disease metadata management subsystem, a rare disease category management and queue management subsystem, a rare disease self-defined form management subsystem, a rare disease knowledge base management subsystem, a rare disease case entry subsystem and a decision analysis platform based on rare disease phenotype information and genomics information.
Unified digital identity management includes unified identity management and authorization management. Identity management and authorization management are the premise of access control, and the identity management identifies and authenticates the identity of a user; authorization management identifies and manages the user's right to access resources. The unified identity management and authorization management system is used as a part of a security management center and is deployed in a security management area.
The unified identity authentication authorization unit mainly comprises a single sign-on module, an identity management module, an authorization management module and a security audit module; the single sign-on module is used for different users to adopt different sign-on windows, so that the experience of the users in using the application system is improved; the identity management module is used for managing the maintenance of user information, department information, role information, an information system and user and role relationship information and realizing the flow management of the digital identity; the authorization management module provides information resources authorized to be accessed by the user according to the identity authentication result of the user and the requirements of an authorization management model and a strategy; the security audit module is used for comprehensively recording and monitoring all login authentication operations and authorized access behaviors of the user, and ensuring that all operations are in a controllable and auditable state.
A single sign-on module: through the single sign-on module, a user does not need to input a user name and a user password every time, and does not need to remember system user names and user passwords of a plurality of different suppliers, so that the experience of using the application system by the user is improved.
An identity management module: the core of unified digital identity management is responsible for defining and identifying digital identities of various entity information, managing maintenance of user information, department information, role information, an information system and user-role relationship information, realizing digital identity flow management and controlling the whole life cycle of the digital identities, and the module can realize the following functions: ensuring that the user has a unique identifier and managing the user identity information by adopting a unified database; the method comprises the following steps of adopting a two-factor authentication mode of a digital certificate and USBKEY to realize identity strengthening authentication, and carrying out safe storage and management on the authentication; the user can be supported to carry out uniform identity authentication; and unified management of user access rights is supported.
An authorization management module: according to the identity authentication result of the user and the requirements of an authorization management model and a strategy, information resources authorized to be accessed by the user are provided, and the module can realize the following functions: according to the authority attribute of the user and the security attribute of the system information, an authorization strategy is formulated; establishing an autonomous access control list based on an authorization strategy according to the user identity information; authorization management, namely determining the access range of the system according to the requirements of domain control and classification protection and according to departments and the responsibilities of personnel; the department is supported to carry out hierarchical authorization, thereby avoiding the complexity of centralized authorization and improving the accuracy of authorization; providing a synchronous interface with the information of the application system module; providing a synchronous interface with authorization information; and an online inquiry interface for providing authorization information.
A security audit module: the module can realize the following functions: the basic behavior audit record function supports the safety audit of various behaviors of the hospital information platform; security audit based on network data flow; the audit automatic dump and the audit online query are supported; safety audit on internal data access behaviors of the medical data system is achieved; the method supports authorized users to inquire audit data through an audit reference tool, and the audit data is easy to understand; integrity protection of audit log data is provided; centralized management of audit data of various security devices.
In the network space, the user cannot exist in the form of a real entity, and can only be represented or identified by an electronic identity certificate. The traditional authentication method is to authenticate a certain identity credential of a user, such as a username/password. However, in a complex multi-application environment, a simple credential definition does not meet the requirement of cross-domain access, and a comprehensive trust mechanism taking digital identity as a core idea needs to be built for each user, so that basic information of the user and information identifications of various specific fields are uniformly managed and embodied as different specific credentials, and reliable authentication and authorization control based on digital identity is provided for various applications. The unified digital identity management provides functions of unified identity management, authorization management, audit management and the like, so that a network trust system taking authentication, authorization and responsibility confirmation as core ideas is constructed. The unified authentication and authorization platform is a basic support platform for single sign-on, identity authentication, authority management, access control, security audit and data encryption. Unified user information management, centralized and distributed information access authorization are needed, and efficient user management is achieved. An identity verification mechanism with high safety and high reliability is required to be adopted, so that the user can realize real-time and reliable identity authentication in the process of accessing the system.
And identity authentication is carried out on management decision personnel, scientific research workers, clinical medical personnel, general users and system maintenance personnel of the hospitals participating in rare disease research through the unified identity authentication and authorization unit so as to determine the access content of the users. For example, administrator-specific service desktop information may be accessible to administrative decision makers; scientific research personnel can access a scientific research and disease topic portal; medical knowledge discovery information, medical analysis and evaluation information, term management information and the like can be accessed by medical staff in a hospital; and system background management information and the like can be accessed by system management personnel.
Wherein the rare disease metadata management subsystem provides an analyzable set of metadata management for the composition of a rare disease. The metadata is: non-differentiable data items that can describe a particular disease category. Metadata is divided into public metadata and private metadata. The common metadata includes some common basic information such as name, gender, age, date of birth, identification number, contact address, etc. The private metadata corresponds to the public metadata, and is specific data belonging to a specific disease category.
The user can better manage the table unit data involved in the queue research through the rare disease metadata management subsystem, the subsystem comprises a set of complete, complete and standard public metadata system, the metadata system conforms to the metadata standard issued by the national health administration committee, the user can refer to the public metadata through simple operation, and a research form can be quickly manufactured.
The system comprises a rare disease type management and queue management subsystem, wherein the rare disease type management and queue management subsystem is used for managing the types of rare diseases and managing different queues of the same type of rare diseases, and a user can check the details and the existing case quantity of each type of rare diseases, the male and female proportion of each type of rare diseases, the national distribution condition and other statistical information through the subsystem.
With the initiation of the rare disease queue, a user needs to make a large number of research forms related to diseases to collect data related to the diseases researched by the user, such as baseline information, follow-up records, diagnosis and treatment records, vital sign record information and the like of the patient. The forms are complex and huge in information quantity, and the rare disease self-defined form management subsystem aims to help researchers to simply and quickly manufacture attractive and practical research forms. In the system, a user can visually design a form template and adjust the layout, the designed display effect is the effect in future use, and the user can also carry out the operations of exporting, backing up, restoring, releasing and the like on a self-defined form.
The rare disease knowledge base management subsystem comprises medical websites with complete national and domestic comparative authoritative information and coverage, different medical websites can be gathered together by establishing the knowledge base management, a user can jump to a plurality of medical websites on one platform, the desired data can be inquired more conveniently and rapidly, the user can record the research result as the form of the knowledge base, and the knowledge base management subsystem comprises the functions of knowledge extraction, editing, publishing, withdrawing, modifying and the like.
The system comprises an uncommon disease case entry subsystem, a user of the uncommon disease case entry subsystem is a researcher and a manager, and the researcher can check and enter existing cases again, set follow-up management on the cases and the like through the new cases added by the subsystem; besides possessing all the operation rights of the researcher, the manager can also view all the case statistical information in the system, and can also view the detailed content of each case.
A decision analysis platform based on phenotypic and genomics information of rare diseases: the tumor gene detection data and the medical record data of a large number of rare diseases collected in the early stage are mainly blood circulation tumor DNA detection data and comprise a tumor sample and a gene detection result of a normal tissue, the decision analysis platform can realize real-time and automatic grabbing of index data through docking of an integrated data warehouse through means such as machine learning and the like based on BI intelligent data, and after data are preprocessed, the data drilling and report flexible display functions of a BI tool are utilized, timely and accurate quantitative data and deep analysis are provided for decision analysis of doctors, and the disease risk of a certain rare disease is accurately predicted.
In conclusion, the unified technical standards and specifications for registration of rare diseases are built, the cooperative network for research of rare diseases in China is formed by combining dominant units of research of rare diseases in China, registration and research of rare diseases with relatively high prevalence rate and great disease damage are developed nationwide, clinical diagnosis and treatment capacity of rare diseases in China is promoted, and the international advanced level is achieved.
The above description is only for the purpose of illustrating the preferred embodiments of the present invention and is not to be construed as limiting the invention, and any modifications, equivalents and improvements made within the spirit and principle of the present invention are intended to be included within the scope of the present invention.
Technical contents not described in detail in the present invention belong to the well-known techniques of those skilled in the art.
Although illustrative embodiments of the present invention have been described above to facilitate the understanding of the present invention by those skilled in the art, it should be understood that the present invention is not limited to the scope of the embodiments, and various changes may be made apparent to those skilled in the art as long as they are within the spirit and scope of the present invention as defined and defined by the appended claims, and all matters of the invention which utilize the inventive concepts are protected.
Claims (10)
1. The system is characterized by comprising a unified identity authentication and authorization unit, a rare disease metadata management subsystem, a rare disease category management and queue management subsystem, a rare disease self-defined form management subsystem, a rare disease knowledge base management subsystem, a rare disease case entry subsystem and a decision analysis platform based on phenotypic information and genomics information of rare diseases.
2. The internet-based rare disease medical data integration system of claim 1, wherein the unified identity authentication authorization unit comprises a single sign-on module, an identity management module, an authorization management module and a security audit module; wherein the content of the first and second substances,
the single sign-on module is used for different users to adopt different sign-on windows;
the identity management module is used for managing the maintenance of user information, department information, role information, an information system and user and role relationship information and realizing the flow management of the digital identity;
the authorization management module provides information resources authorized to be accessed by the user according to the identity authentication result of the user and the requirements of an authorization management model and a strategy;
the security audit module is used for comprehensively recording and monitoring all login authentication operations and authorized access behaviors of the user, and ensuring that all operations are in a controllable and auditable state.
3. The internet-based rare medical data integration system of claim 1, wherein the rare metadata management subsystem is configured to provide analyzable metadata management regarding the composition of a rare event.
4. The internet-based rare medical data integration system of claim 3, wherein the metadata is an indivisible data item that describes a particular rare disease species, and wherein the metadata comprises public metadata and private metadata.
5. The internet-based rare medical data integration system of claim 4, wherein the public metadata comprises basic information of the patient, and the private metadata corresponds to the public metadata.
6. The internet-based rare medical data integration system of claim 1, wherein the rare disease species management and cohort management subsystem is configured to manage the species of rare diseases and to manage different cohorts of the same species of disease.
7. The internet-based rare medical data integration system of claim 1, wherein the rare custom form management subsystem is capable of managing the research forms of the rare disease species.
8. The internet-based rare medical data integration system of claim 1, wherein the rare knowledge base management subsystem is capable of managing the rare knowledge base information.
9. The internet-based rare medical data integration system of claim 1, wherein the rare case entry subsystem is capable of managing the rare case information entered.
10. The internet-based rare disease medical data integration system of claim 1, wherein the rare disease phenotype information and genomic information based decision analysis platform is docked through an integrated data warehouse to capture rare disease phenotype information data and genomic information data, preprocesses the data, and provides quantitative data and predicts the risk of a certain rare disease for the rare disease decision analysis by using data drilling and report presentation functions of a BI tool.
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| CN113094730A (en) * | 2021-04-16 | 2021-07-09 | 杭州卓健信息科技有限公司 | Medical data safety management platform based on internet |
| CN113094730B (en) * | 2021-04-16 | 2022-07-26 | 杭州卓健信息科技股份有限公司 | Medical data safety management platform based on internet |
| WO2022241481A1 (en) * | 2021-05-14 | 2022-11-17 | Tmaccelerator Company, Llc | Precision medicine systems and methods |
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