How does the national standard for the construction of medical centers for rare diseases refer to the information construction of hospitals?

The Standard for the Establishment of National Medical Center for Rare Diseases defines the relevant requirements for the application for the establishment of the National Medical Center for Rare Diseases from six aspects: basic requirements, medical service ability, teaching ability, scientific research ability, undertaking public health tasks and social welfare tasks, implementing medical reform-related tasks and hospital management.

In the "Implementation of Medical Reform Related Tasks and Hospital Management", it is clearly pointed out that:

(1) telemedicine service. It has a high-level telemedicine platform and service ability, and has the ability to carry out remote consultation, remote case discussion, remote diagnosis, remote medical education and scientific research cooperation. Telemedicine services cover more than 25 provinces and more than 200 medical institutions at all levels. In recent three years, telemedicine services for rare diseases have been provided ≥ 100 cases.

(2) Information construction. Building a high-level hospital information platform can provide information support for the clinic, scientific research, teaching and management of the National Medical Center for Rare Diseases. The grading evaluation of the application level of electronic medical record system meets the five-level requirements; The construction of information platform meets the requirements of Grade IV and Grade A in the Evaluation of Hospital Information Interconnection Standardization Maturity; Gradually connect with the regional health information platform to realize the safe sharing of regional medical information; The core business system of the hospital meets the third-level requirements of the national information security level protection system.

In "undertaking public health tasks and social welfare tasks", it is clearly pointed out that:

Surveillance of rare diseases. Participate in the construction and management of the national information system for diagnosis and treatment of rare diseases, and dynamically monitor the epidemiological distribution and disease load of all rare diseases in China based on the information system.