A healthcare data collection and utilization ecosystem must be established.
The need to build a data platform and foster de-identification organizations
We need to move away from the dichotomous thinking of deregulation/strengthening regulations.


The Moon Jae-in administration's policy to expand health insurance coverage aims to raise the national health insurance coverage rate, currently at 60%, to 70%. It focuses on promoting health through improved treatment and access to healthcare.

Clearly, these policies will bring significant benefits to the public. However, they have nothing to do with slowing the rise in medical costs. When prices fall, increasing consumption is economically rational. People want to see a doctor multiple times for a condition that could be cured with a single visit, but if the treatment is inexpensive, they'll be more likely to see a doctor more frequently to ensure a positive outcome.
The more frequently people visit the hospital, the more likely they are to reduce their investment in chronic disease prevention. This means the prevalence of chronic diseases could increase further. Therefore, simply expanding medical coverage cannot achieve national health promotion and reduction in medical expenses.

On December 18, at the seminar titled “Strengthening the Competitiveness of the Smart Healthcare Industry” hosted by the Korea Economic Research Institute (KERI) at the Topaz Room on the 2nd floor of the Federation of Korean Industries Conference Center, Professor Hong Seok-cheol of the Department of Economics at Seoul National University, who was a presenter, said, “As the aging population deepens, national medical expenses and financial burden are rapidly increasing,” and “The fundamental solution is to improve the efficiency of healthcare.”

Next, Jeong Il-young, a research fellow at the Science and Technology Policy Institute, said, “Smart healthcare is an industry based on innovative technology and data,” and pointed out that, “While personal information is protected at a much stronger level than in the United States, legal preparations for the use of data, which is the infrastructure for innovative technology, are insufficient.”

Citing the U.S. FDA's regulatory approach to the smart healthcare industry as an example, the government research fellow emphasized the importance of the government's role in new industrial areas, saying, "The government must consistently coordinate with stakeholders to establish guidelines, and advanced regulations are about flexibility rather than perfection."


A national vision and strategy for utilizing healthcare data must be established.
According to the ‘Data Integration Plan for Building a Healthcare Ecosystem’ co-authored by a government research fellow, in order to implement medical research, medical service model development, product and service development, and efficient administration utilizing healthcare data, it is necessary to first ‘form an ecosystem that can collect, build, and utilize healthcare data.’

For an ecosystem to be formed, a comprehensive national vision and policy design regarding data utilization must first be established. Furthermore, there must be a social consensus and change in perception regarding data utilization, as well as a reorganization of laws and regulations for accessing and utilizing healthcare data, the establishment of a data integration platform, and the training of de-identification organizations.

Around the world, national strategies and visions for data utilization are being established and systematic data collection is underway to create added value for medical research and industry through healthcare data. The United States and Japan have already begun large-scale healthcare data development initiatives involving voluntary participation by individuals.

In Korea, numerous policy projects utilizing healthcare data are underway, centered around the Ministry of Health and Welfare. However, the national policy direction and vision for data utilization are lacking, and the policy's driving force and consistency are insufficient. Therefore, there is an urgent need to establish a national vision and strategy.

To gather and utilize a vast amount of distributed data, data generated in various formats must be refined and integrated. Therefore, the government must recognize the significant time and effort required and establish a roadmap for implementing these policies.

Most domestic data-related policies focus on utilization and industrialization, rather than data purification, processing, linking, and integration. This expectation of rapid results leads to a failure to establish a solid foundation. Data purification, processing, linking, and integration are areas that do not yield tangible results and are difficult for the private sector to lead. Therefore, the government must focus on establishing infrastructure for data utilization.


A shift in social perception of data ownership is needed.
Before establishing precision medicine data, the United States is fostering a healthcare service environment through the Blue Button Initiative, which raises awareness of personal health information ownership and enables patients to receive treatment using their data.
The Blue Button Initiative is a campaign that allows people to download their medical and health records online and share them with medical professionals and hospitals of their choice.

In Korea, ownership of personal medical information remains unclear, and the public lacks a clear understanding of it. Therefore, societal discussion and consensus on ownership, along with data integration and utilization, are necessary. To this end, stakeholders (medical institutions, civic groups, etc.) have sharply differing positions on the ownership of medical information.

In November 2017, several civic groups filed a complaint against four data anonymization agencies, including the Korea Internet & Security Agency, for violating the Personal Information Protection Act, and in October, they also filed a criminal complaint against the Health Insurance Review & Assessment Service. To prevent this, it is necessary to establish a national direction and position on medical information ownership and to change awareness through campaigns.


We need to review relevant laws and regulations for the protection and use of personal information.
In Korea, healthcare data is considered personal information and is protected by laws such as the Personal Information Protection Act and the Bioethics Act. However, when looking at data utilization, the definition and scope of personal information are unclear, and the law is open to arbitrary interpretation, hindering data utilization. Therefore, it is necessary to supplement the ambiguities in the definition of personal information in domestic laws and provide detailed explanations and examples to ensure clarity and promote data utilization.

To safely protect healthcare big data while simultaneously fostering leading medical research and developing new business models, it is necessary to review relevant domestic laws and enact new laws related to the secure collection, construction, and utilization of healthcare data.

Personal information is classified into personal information, sensitive information, and personally identifiable information under domestic laws, but there is no concept of hierarchy between each category, and it is unclear what protective measures should be taken for each category. This is a situation where the primary users of data must subjectively take protective measures and bear the risk.

To prevent this, the definition and scope of personal information must be clearly defined, personal information must be categorized into levels based on sensitivity, and differentiated protection measures must be established for high, medium, and low levels. Furthermore, industrial utilization plans must be explored for personal and health information with low sensitivity.


Personal information that has been donated must be de-identified and linked to the platform.
In the current healthcare system, personal medical and health information is managed in various forms across multiple institutions, including medical institutions, public agencies (e.g., the National Health Insurance Service, the Health Insurance Review & Assessment Service), and private companies. Therefore, efforts are needed to de-identify and integrate data—including birth, vaccination, and health checkup records, medical treatment records, and health information measured by individuals—with the consent of the individual, into a single, integrated platform.
Globally, healthcare is a field where big data is constantly being generated. For data to be effectively utilized and distributed in the future, the Social Security Information Service must become the de-identification management agency, and a management system must be established whereby private companies with technological capabilities can take charge of de-identification measures.

The government research fellow said, “In order to strengthen the competitiveness of the smart healthcare industry, we need to move away from the dichotomous thinking of deregulation or strengthening regulations and seek a new institutional approach,” and added, “In order to protect and utilize healthcare data, which is a key driver, we need to strengthen the legal foundation, enhance the expertise and personnel of regulatory and review agencies, establish a public database, and strengthen individuals’ data sovereignty.”


The first step has been taken
The Ministry of Health and Welfare announced on the 2nd that it will complete development of a healthcare big data platform by the second half of 2019. Work is also underway to establish legal frameworks for data sharing and utilization.

The role of the healthcare big data platform is to provide healthcare big data from public institutions such as the Health Insurance Review & Assessment Service, National Health Insurance Service, Korea Centers for Disease Control and Prevention, and National Cancer Center to researchers for public interest and research purposes.

The Ministry of Health and Welfare will develop a system to transmit and link data from four institutions by the second half of the year. This system will include a Trusted Third Party (TTP) that issues data linkage keys, a de-identification system, and a function and performance testing system. This will be shared with researchers on a pilot basis starting in 2020 at the latest.

Oh Sang-yoon, head of the Ministry of Health and Welfare's Medical Information Policy Division, said, "We will create a single data set of healthcare big data held by individual institutions and support research by linking them together," adding, "We plan to launch the actual project after revising and supplementing it through a pilot project of about two years."

There's still a long way to go, but the first step has been taken. As mentioned several times above, the government's role in the smart healthcare industry is crucial. The government must move beyond short-term, dichotomous thinking and consider long-term data utilization methods, while engaging in continuous communication with private companies. Improving public health and fostering new industries depend solely on the government's efforts.