[Reading Science] Healthcare Big Data Construction, Domestic and International Standardization Efforts Progressing Smoothly

Yeom Minseop, President of KHIS: "Standardized Health and Medical Big Data Is Essential"
"KHIS Will Actively Fulfill Its Role as the National Medical Data Intermediary Agency"

The national integrated bio big data construction project, aimed at securing human biological resource data for 772,000 people by 2028, is now in full swing. In addition, with the explosive growth and utilization of health and medical data, efforts are underway to establish legal frameworks and promote global data use. Both domestic and international standardization work to ensure interoperability of health and medical data is also taking root.

The Korea Health Information Service (KHIS), under the Ministry of Health and Welfare, announced at the Digital Healthcare Media Academy held at the Korea Chamber of Commerce and Industry in Seoul on September 10 that it plans to collect medical and genetic data from 585,000 members of the general public, 32,000 patients with rare diseases, and 140,000 patients with severe diseases by 2028, and register this information on the national integrated bio big data platform.

Yeom Minseop, president of the Korea Health Information Service (KHIS), is answering reporters' questions. Photo by Kim Jonghwa

KHIS Publicizes Big Data Research Goals... Establishing a Precision Disease Management System

KHIS began the national bio big data pilot project from 2020 to 2022, launched the main project in 2023, and aims to secure data from 1 million people by 2030. KHIS plans to release and open this data for research purposes, thereby laying the foundation for precision medicine that enables patient-specific diagnosis and treatment, enabling early identification of high-risk groups for certain diseases such as diabetes and cardiovascular conditions, and facilitating early analysis of the spread of infectious diseases like COVID-19. The goal is to establish a public health and disease prediction and management system.

Furthermore, the project can play a key role in strengthening national competitiveness by promoting innovation in the bio and pharmaceutical industries, such as AI-based drug development and leading healthcare innovation. In addition, by establishing regulations for personal information protection within big data and for international data sharing, it can help set global standards.

Major countries are also pursuing large-scale national bio big data projects to accelerate the advancement of precision medicine and the competitiveness of the bio industry. In the United States, the National Institutes of Health (NIH) has been collecting genomic, clinical, and lifestyle data from 570,000 people since 2017 through the "All of Us" project. In the United Kingdom, since 2006, the "UK Biobank" project has comprehensively secured genomic, clinical, lifestyle, and imaging data from 500,000 people and opened it to researchers in academia and industry.

Jongdeok Kim, Director of the Health and Medical Data Promotion Headquarters at KHIS. Provided by KHIS

China is collecting health and genomic information from hundreds of thousands to millions of people at the national level, while Japan has collected data from 270,000 people through projects such as "Biobank Japan," which began after the Great East Japan Earthquake, contributing to research on personalized medicine.

"Currently, Data from About 65,000 People Collected, Managed with National Intelligence Service-Level Security"

Jongdeok Kim, Director of the Health and Medical Data Promotion Headquarters at KHIS, stated, "Although the project is still in its early stages, we have already collected health and medical data from about 65,000 people, which shows rapid progress." He added, "The personal information collected is managed with legal and policy credibility, including the establishment of security in accordance with National Intelligence Service standards."

With the development of artificial intelligence (AI) technology, the explosive increase in interoperability and utilization of health and medical data, as well as the push for legal frameworks and global data use, have brought domestic and international standardization work for health and medical data interoperability into full gear.

KHIS plans to benchmark the standardization policies of the Office of the National Coordinator (ONC), an organization under the U.S. Department of Health and Human Services (HHS), to develop and distribute national-level health information technology (Health IT) policies and electronic health information exchange (HIE) infrastructure.

Just as the United States enacted the Health Information Technology for Economic and Clinical Health (HITECH) Act in 2009, mandating the adoption of electronic health record (EHR) systems by medical institutions, South Korea implemented a national standard electronic medical record (EMR) system certification system in 2020.

Kwon Aekyung, Director of the Korea Health Information Service Healthcare Standardization Project Group. Provided by Korea Health Information Service

Integration of Korea Core Data Interchange (KR CDI) and Securing Interoperability

Based on this EMR information, decisions on what to standardize have been integrated into the "Korea Core Data Interchange (KR CDI)." The "Korea Core Reference (KR CORE)" defines how to standardize, and after securing interoperability, the plan is to make KR CDI widely available through integrated governance.

To ensure interoperability with major countries, a global standard version called "KR CDI V2" is also under development. By entering separate item values into the national-level core data interchange set (KR CDI), it will be possible to search for detailed information. For example, when searching for clinical information about "anesthesia methods," a new item called "SNOMED CT" will be added, enabling the acquisition of additional information based on detailed classifications such as patient condition or age.

Kwon Aekyung, Director of the KHIS Healthcare Standardization Project Group, explained, "Standardization is a way to express data clearly. Interoperability strategies and AI development/utilization strategies are complementary," adding, "We are carrying out various activities for domestic and international standards, including the development of the next version of KR CDI."

Yeom Minseop, President of KHIS, emphasized, "Standardized big data is essential for public health management, such as operating an integrated infectious disease information system and realizing personalized precision medicine. To promote international cooperation, we need to go beyond domestic standardization and align with international standards. As KHIS has been designated as the national medical data intermediary agency and is operating on a pilot basis, we will actively fulfill our role as a control tower going forward."