The Russian Ministry of Health will track information about cancer patients through a special registry

The decree approving the "Rules for maintaining the federal register of persons with certain diseases" was signed by the head of the Russian Government Mikhail Mishustin on May 31, 2024. This system will be integrated with the components of a single digital circuit - this is a federal register for the provision of preferential drugs, the State Information System of Compulsory Medical Insurance, the Medical Information System of Clinics and regional State Information Systems.

The main purpose of introducing the register, according to the resolution, is to monitor morbidity and demographic indicators, as well as “financial and economic planning” of healthcare resources.

Initially, at the stage of preparing the resolution, it was planned to launch the registry in 2024 and spend 435 million rubles annually on its creation. The registry, according to the Ministry of Health, should free health workers from multiple inputs of information about one patient into "various information systems at the level of medical organizations." This will become possible as a result of the merger of "independent federal registries that do not allow for the recording of patients with a wide range of diseases and conditions."

The registry will contain statistics on patients with one of 12 diagnosis groups. These are malignant neoplasms (ICD codes C00-C96); neoplasms in situ (D00-D09); diabetes mellitus (E10-E14); mental and behavioral disorders (F01, F03-F99); ischemic heart disease, including those with rhythm and conduction disorders (I20-I24, I44-I49); the presence of cardiac and vascular implants and transplants (Z95.0); cardiomyopathy (I42); heart failure (I50); acute cerebrovascular accidents (I60-I66); liver diseases, including alcoholic etiology (K70-K76); pregnancy, childbirth and the postpartum period (O00-099); chronic obstructive pulmonary disease (J44).

Information will be supplied to the register by the Russian Ministry of Health, the Federal Compulsory Medical Insurance Fund, the Social Fund, regional health authorities, clinics and pharmaceutical organizations, as well as the operator of the drug movement monitoring system.

The consumers of information include the Russian Ministry of Health and executive bodies in the field of health care (with access to depersonalized data), Roszdravnadzor (for state control), Rosstat, federal government bodies, and pharmacy organizations.

A detailed composition of the collected data has been defined, and indicators indicating the quality of medical care provided have been specified. Many of them are taken into account by compulsory medical insurance auditors during inspections or are contained in the section on target indicators of federal projects. For example, the registry will store the prevalence of a particular disease per 100 thousand people, the coverage of patients with dispensary observation, drug provision, medical products, information on hospitalization, complications and repeated patient visits.

The federal regulator will separately examine such indicators as the proportion of patients with stage 1-2 malignant neoplasms, the proportion of those whose diagnosis is confirmed by laboratory tests, the time period from diagnosis to the start of treatment, the number of chemotherapy courses per patient, and the frequency of relapses after surgical treatment.

During pregnancy, for example, information on the use of ART, the number of premature babies and critical obstetric conditions will be subject to special recording.

Currently, the Russian Ministry of Health and Rosstat collect specialized statistics annually using federal statistical monitoring forms. Some of the information is contained in the registers of compulsory medical insurance accounts that are received by the State Information System of Compulsory Medical Insurance on a monthly basis; monitoring of the implementation of target indicators of regions for various federal projects and "incidents" of the ministry is also carried out on an ongoing basis. However, the department does not have a tool for operational monitoring of specific data, and the special register, based on the text of the resolution and comments of the ministry, is designed to solve this problem.

The registry will be part of a large-scale update of industry programs along with the launch of new national projects, including “Long and Active Life,” the main activities of which are aimed at combating cancer, cardiovascular diseases, and diabetes, and “Family,” which will develop a network of women’s consultations and modernize the infrastructure for providing medical care to children.