Project name: Digitization and optimization of the health care system for patients with rare diseases

Project start date:  1. 3. 2023
Project end date: 31. 05. 2026
Budget: 9,680,000 CZK including VAT
Project implementer: General University Hospital in Prague

Project brief:

The main goal of the project is the creation of a data standard for health information on patients with selected rare diseases (RA), its pilot implementation into the hospital information system of two providers of highly specialized care for these patients, and pilot operation. Another goal is to create a coordination background for VO issues within the Ministry of Health and the Institute of Health Information and Statistics of the Czech Republic and a unified virtual platform for rare diseases.

Among the priority areas that currently have the highest potential for improving the health of the Czech population and are at the same time key to coping with rapid technical and technological progress is the digitization of the healthcare sector. The challenge for healthcare is to initiate a coordinated digital transformation to reform healthcare services. By implementing the project, the Ministry of Health intends to fulfill the following priorities of the Health 2030 Strategic Framework.

The sharing of accurate and unambiguously interpretable health information is the basis for quality and safe health care as well as its continuity when the patient's place of residence changes. In the case of complex rare diseases, for which their multi-organ character is typical, data sharing is a prerequisite for interdisciplinary consultations of patients at the national and international level, as well as for their transfer to care between medical professionals of different specialties and between different types of medical facilities. After the adoption of the necessary legislative measures, the existence of standardized data collection will further enable their secondary use for health registers, health care planning and for epidemiological and clinical research.

The project budget is a total of CZK 9,680,000, of which CZK 8,000,000 will be financed through the National Recovery Plan and CZK 1,680,000 from the state budget.

The project is co-financed by the European Union from the funds of the Recovery and Resilience Instrument (RRF) through the National Recovery Plan of the Czech Republic from call No. 27 (predefined project, component 1. 2 Digital systems of public administration, Reform 2: Building and developing systems supporting the electronicization of healthcare)

Project "Digitization and optimization of the health care system for patients with rare diseases"
is co-financed by the European Union NextGeneration EU