Questions/Answers
Question 1
Please briefly describe the initiative, what issue or challenge it aims to address and specify its objectives (300 words maximum)
The Health Insurance Review and Assessment Service (HIRA) operates Korea’s health insurance program and collects roughly three petabytes of big data on medical records and resources in the nation. We focus on utilizing such big data effectively while creating new value. We make the big data accessible to academic, medical, and industrial circles through our Healthcare Bigdata Hub program.
HIRA’s big data is used to lay the foundation for formulating healthcare policies for national health. The big data can be used for public health services by supporting responses to infectious diseases, expanding health coverage, and providing health-related information, allowing the people to enjoy safe medical services.
The Healthcare Bigdata Hub is divided into two main axes: “openness” and “utilization.” HIRA aims to utilize the hub in diverse areas for the government, medical community, and industry.
Above all, HIRA provides the public with information on medical institutions and diseases to ensure the people’s right to choose the medical care they want. We also aim to use the data as basic data for public health policy in order to formulate and implement policies efficiently and scientifically. For the medical community, the Healthcare Bigdata Hub supports medical professionals in conducting research and developing new medical techniques based on the data it provides and ultimately ensures that patients get the treatments they need. For the industrial community, the hub is used widely for the development of new drugs, materials for medical treatment, and customized healthcare services, contributing to the development of the digital-based healthcare industry and promotion of public health.
Question 2
Please explain how the initiative is linked to the selected category (100 words maximum)
This project is linked to Category No. 2: “Enhancing the effectiveness of public institutions to achieve the SDGs.”
Data that goes unused is like stagnant water. The Healthcare Big Data Hub contains national health insurance data in each area, and HIRA makes the data open to the public, contributing to the production of tangible and intangible knowledge and information.
The Healthcare Big Data Hub is utilized in diverse areas in the private sector as well, such as the healthcare industry and serves as the foundation for SDG No. 3: “Ensure healthy lives and promote well-being for all at all ages.”
Question 3
a. Please specify which SDGs and target(s) the initiative supports and describe concretely how the initiative has contributed to their implementation (200 words maximum)
HIRA’s Healthcare Big Data Hub is related to two SDGs.
SDG No. 3: HIRA is committed to assuring the public’s healthy life and promoting the welfare of all citizens by publicly opening the vast amount of data it has collected for the review and evaluation of medical costs and other work-related purposes and promoting its utilization. By making healthcare big data based on bills for paid medical expenses, HIRA contributes to formulating health and medical policies, developing new drugs and medical equipment, and building other health care infrastructure.
We made our data on COVID-19 prevention and control open to the public to support the efficient distribution of data-based disease prevention resources. We also worked together with the public and private sectors to establish an emergency face mask distribution system and develop the Open API, which is designed to provide information on face mask inventories and locations, thus facilitating the purchasing of face masks early in the outbreak.
SDG No. 8: HIRA supports healthcare big data-based R&D. Since 2015, we have held our healthcare big data startup contest annually and supported the commercialization and market entry of award-winners. In 2020, we also created 44 jobs, thus contributing to economic growth.
b. Please describe what makes the initiative sustainable in social, economic and environmental terms (100 words maximum)
Data openness, as a historical and social trend, supports the sustainability of this project. As technological development ushers in the “My Data Era,” where individuals actively utilize information on their own, the Healthcare Bigdata Hub can now be applied to the development of medical technology and services, such as contactless healthcare services using personal health records (PHRs) based on HIRA’s healthcare big data, digital healthcare, and the like.
Question 4
a. Please explain how the initiative has addressed a significant shortfall in governance, public administration or public service within the context of a given country or region. (200 words maximum)
In Korea, there is a wide gap between Seoul, where major infrastructure and resources are concentrated, and other regions. Differences in economic development and education are especially prominent. HIRA has sought to achieve mutual economic and social prosperity by forging partnerships with local communities and used big data to fulfill its goals. We work to provide on-the-job training in the Gangwon area through industry, academia, and government collaboration. With the emerging contactless world, we have offered online, offline, and hybrid education, featuring independently-produced videos and providing students with customized field training. We have also shared big data infrastructure and analysis technology with local communities to produce data experts.
We participated in a national ICT program on big data-based local economic vitalization and collaborated with industry-academia teams at universities in the Gangwon area to build the next-generation healthcare platform MEDBIZ. HIRA carried out the project by dividing duties based on the teams’ strengths and competencies, including data analysis and loT development, among others. We supported data linkage for an analysis of chronic obstructive pulmonary disease and a metabolic syndrome cohort. By supporting big data analysis based on clinical and loT biometric information, we succeeded in developing the Soom Health app.
b. Please describe how your initiative addresses gender inequality in the country context. (100 words maximum)
First, data quality control is important to make data that meet the needs of users publicly available and make customized data sets more accessible. We took advantage of public data youth interns and aimed to achieve gender balance among our personnel, achieving a male-to-female ratio of 8:14 for the project.
Second, HIRA’s big data consist largely of information on healthcare and, accordingly, are used mainly by healthcare professionals. In the Republic of Korea, however, female healthcare professionals outnumber their male counterparts by four times. In this respect, women, as a relative social minority, benefit from the program more than men.
c. Please describe who the target group(s) were, and explain how the initiative improved outcomes for these target groups. (200 words maximum)
Our target groups include the healthcare and industrial communities, academia, and policy makers, who utilize our data for academic research and industrial vitalization.
However, the formulation of policies based on HIRA’s big data and big data commercialization ultimately affect the health and lives of the general public. Therefore, our end target group is the entire population.
The most prominent achievement of HIRA’s big data-based R&D activity is our annual healthcare big data startup contest, which started in 2015. Through this contest, HIRA has supported startups that came up with ideas based on its data. The contest has evolved from a one-off event into the HIRA Center of Outreach Partnership (COOP), a systematic training system that supports award-winning startups throughout all stages, from the discovery of ideas to the development of the ideas into businesses.
We have provided data customized to business ideas and support for R&D analysis, as well as follow-up support necessary for the development of ideas into businesses by providing consulting services from investment and legal experts. For example, Lineworks, which participated in the 2020 startup contest, published a research paper in the U.S.-based Journal of the American Heart Association and attracted an investment of KRW 50 billion.
Question 5
a. Please describe how the initiative was implemented including key developments and steps, monitoring and evaluation activities, and the chronology. (300 words)
In 2013, the Korean government implemented the open data policy. HIRA immediately started analyzing the large amount of data it had collected to establish the remote access and statistical analysis systems needed to make the data available as a research resource. We drew up the “Big Data Plan” and, in 2015, completed the Healthcare Bigdata Hub. Since then, we have been making healthcare big data accessible in diverse areas.
Our efforts and achievements in expanding data accessibility have been monitored by the Ministry of the Interior and Safety and Ministry of Health and Welfare. Also, the feasibility of the projects HIRA undertakes is evaluated based on HIRA’s provision of public data and business performance.
HIRA decided to establish a mid- to long-term plan for project advancement and then created a five-year comprehensive plan in 2019. The institution also started to set an annual performance goal, which establishes the pace of the year’s projects. For the Healthcare Bigdata Hub program, related systems record and calculate, monthly/quarterly, how much healthcare data has been opened for internal and external evaluation to check whether the project goal is being satisfied. In addition to evaluating the number of items of data opened or other countable items, HIRA also evaluates unquantifiable items related to project progress. This qualitative evaluation results are subject to review, and the feedback helps supplement and improve the project further.
b. Please clearly explain the obstacles encountered and how they were overcome. (100 words)
As the healthcare data HIRA has collected is classified as highly sensitive, the medical community and civic groups have expressed concerns about data misuse and leakages of various types.
HIRA has thus strived to minimize personal information leakage since the implementation of the open data policy.
We held a meeting for the open public data deliberation committee, consisting of scholars, medical and legal professionals, and civic group members. We also worked to prevent data leakages and related problems, such as third-party violations of rights, by ensuring the democratic decision-making of external committee members and objectivity and security of information provision.
Question 6
a. Please explain in what ways the initiative is innovative in the context of your country or region. (100 words maximum)
HIRA undertook a research project on international cooperation for prompt responses to COVID-19. Early in the outbreak, there was a lack of clinical and policy data necessary for such prompt responses.
As the first institute in the world to build an anonymized cohort dataset of suspected and confirmed COVID-19 patients for research purposes, HIRA has provided such data, which pose no risk of personal information leakage, for 412 research projects in 32 nations worldwide.
We also created a research website for international cooperation to provide prompt support and a stable research environment for researchers at home and abroad.
b. Please describe, if relevant, how the initiative drew inspiration from successful initiatives in other regions, countries and localities. (100 words maximum)
HIRA updated the analysis database of the Healthcare Bigdata Hub, which was built for medical professionals, to increase the accessibility of the data to the public. We were inspired by Britain’s National Health Service and the U.S.’ Center for Medicare and Medicaid Services.
The update was done based on the fact that such public health-related government agencies in major countries are providing visualizations of key health and medical information for the general public. We thus now offer a keyword search window, disease summaries, and public-friendly, non-standardized statistical information to promote people’s right to know and choose medical treatments.
c. If emerging and frontier technologies were used, please state how those were integrated into the initiative and/or how the initiative embraced digital government. (100 words maximum)
It is important to upgrade the big data management system in order to respond to the data-related legal environment and advancement of ICT. HIRA paid special attention to improving data quality and infrastructure and formulated an information strategic plan (ISP) to build a next-generation healthcare big data hub. Considering the problems involved in operating and maintaining a platform that utilizes our own equipment, as it has to be replaced periodically, and responding to the demand for data, we decided to employ the cloud method. In doing so, we expect to save KRW 40 million a year.
Question 7
a. Has the initiative been transferred and/or adapted to other contexts (e.g. other cities, countries or regions) to your organization’s knowledge? If yes, please explain where and how. (200 words maximum)
In 2019, HIRA completed the establishment of the SEHATI-IT system for Bahrain. We built this comprehensive information system, consisting of the Drug Utilization Review (DUR), National Health Insurance Information System (NHIIS), National Electronic Medical Repository (NEMR), and Smart Utilization of NEMR (SUN) system, for the operation and management of Bahrain’s health insurance program.
Among the system’s components, the SUN system, which is designed for the analysis and utilization of national healthcare data, allows people from all walks of life, including policy makers and health service professionals as well as the general public, to readily and promptly access the healthcare data collected and stored in the NEMR.
Many institutions in Korea, including the National Tax Service and Ministry of Food and Drug Safety, are benchmarking HIRA’s Healthcare Bigdata Hub for their open data programs.
b. If not yet transferred/adapted to other contexts, please describe the potential for transferability. (200 words maximum)
In July 2021, HIRA agreed to establish a cooperative governance system with the Danish Medicines Agency (DKMA) and promote cooperation in the field of healthcare between the two nations by holding regular seminars, at the request of the Denmark Embassy in the Republic of Korea. One of the major agendas is related to the utilization of healthcare big data.
The DKMA established Data Analytics Centre (DAC) a year ago to create results through data utilization and analysis. In response to the DKMA’s request, HIRA shared details on its utilization of big data at the regular seminars. DKMA has just started to lay a foundation for the establishment of a comprehensive data analysis system so that corporate and research institutions can work together to come up with useful outcomes for the public. In a nation like Denmark, which has vast amount of nation-wide various healthcare data just like Korea, HIRA’s Healthcare Big Data Hub management system will be an important model for benchmarking.
Question 8
a. What specific resources (i.e. financial, human or others) were used to implement the initiative? (100 words maximum)
In 2015, HIRA spent KRW 9.5 billion to establish the Healthcare Bigdata Hub. Since then, we have spent roughly KRW 2 billion a year on system maintenance and other relevant projects.
The Healthcare Bigdata Hub Program was launched in 2013 by a group of nine experts with the Statistical Information Center, who completed the creation of the hub in 2015. Currently, a total of 66 workers are carrying out the project. Later, the statistical work was transferred to another department. Instead, the Statistical Information Center was renamed the “Big Data Office” as a department dedicated solely to big data.
b. Please explain what makes the initiative sustainable over time, in financial and institutional terms. (100 words maximum)
HIRA charges the lowest possible fee for data use to ensure the sustainability of the Healthcare Bigdata Hub. For the stable operation and sustainability of the data platform, we are undertaking an information strategic plan to establish the next generation of the Healthcare Bigdata Hub. We have found that the hub needs to be maintained and periodically replaced using independently-developed equipment. We also plan to create a cloud-based system that we expect will save KRW 40 million a year in maintenance costs.
Question 9
a. Was the initiative formally evaluated either internally or externally?
Yes
b. Please describe how it was evaluated and by whom? (100 words maximum)
HIRA has been named an excellent institution for two consecutive years in the evaluation of the provision and operation of public data of 500 institutions conducted by Korea’s Ministry of the Interior and Safety. Started in 2019, the evaluation is conducted by a committee of private sector experts to ensure objectivity and fairness.
The committee evaluates public data in five areas, and grades it according to a three-point grading system. HIRA received perfect scores in all areas in the 2020 evaluation and was recognized as a leader in public data in the healthcare area.
c. Please describe the indicators and tools used (100 words maximum)
The evaluation of public data provision and operation consists of 16 indicators in five areas, including management system, openness, utilization, quality, and others (strengths/weaknesses), in order to assess public data provision and operation in all areas.
The management system and openness areas are used to evaluate the efforts to lay the foundation for public data and open and discover new data, respectively. Also, the utilization area is used to measure the effort to expand the scope of data utilization, while the quality area is used to evaluate maintenance, including the data management system and data error detection.
d. What were the main findings of the evaluation (e.g. adequacy of resources mobilized for the initiative, quality of implementation and challenges faced, main outcomes, sustainability of the initiative, impacts) and how this information is being used to inform the initiative’s implementation. (200 words maximum)
The evaluation results are reported to the Public Data Strategy Committee and State Council, and the evaluation grade of each institution is open to the public. Outstanding institutions are given incentives through the possibility of earning extra points for good performance evaluations. Feedback is important for HIRA to assess the future direction of its public data disclosure and revise its public data system.
The evaluation conducted in 2021 reflected changes in the political environment regarding public data disclosure and focused on user-centric public data disclosure.
HIRA has made an effort to proactively open data that meets market needs to promote the application of healthcare big data to a wider variety of areas.
Question 10
Please describe how the initiative is inscribed in the relevant institutional landscape (for example, how it was situated with respect to relevant government agencies, and how the institutional relationships with those have been operating). (200 words maximum)
As HIRA is affiliated with the central government, its big data disclosure program is bound to support the central government’s disclosure policy. Accordingly, we draw up detailed plans in accordance with government policy.
We also provide information related to suspicious deaths, human tissue transplantation, and emergency patients to relevant government-affiliated institutions and local governments on a regular basis in accordance with relevant laws and policies.
However, details such as the method, scope, and level of disclosure are decided at our own discretion.
For data provided to the general public, businesses, local governments, and government-affiliated institutions, we approve data disclosure based on the decision of our Public Data Disclosure Deliberation Committee. In this respect, we perform our duty independently.
Question 11
The 2030 Agenda for Sustainable Development puts emphasis on collaboration, engagement, partnerships, and inclusion. Please describe which stakeholders were engaged in designing, implementing and evaluating the initiative and how this engagement took place. (200 words maximum)
The government implemented its big data disclosure policy with the enactment of big data-related laws in order to secure the right of the public to know and achieve a data-driven society. In order for the public to benefit from public data services, HIRA makes a concerted effort to improve the Healthcare Bigdata Hub
program by engaging in diverse activities. We consult with experts in relevant areas, sign contracts for cooperation with medical institutions and academic communities, hold international forums, receive feedback and audits from the government, forge partnerships with IT service providers for system upgrades, conduct user surveys, and listen to customers.
The Public Data Disclosure Deliberation Committee consists of 16 members, including nine external members. The majority of members are stakeholders from all walks of life, including lawyers, professors, and representatives of civic groups.
Question 12
Please describe the key lessons learned, and how your organization plans to improve the initiative. (200 words maximum)
Due to population aging and the growing public interest in health, there is an increasing awareness of the importance of healthcare data and its use. HIRA, a public institution that possess national healthcare data, is committed to fulfilling its responsibility for promoting national health through data utilization based on technological infrastructure and consensus among stakeholders in diverse areas.
As Korea’s first public institution to create a big data hub system, HIRA has strived to improve data quality and the data disclosure process by reflecting the demands of stakeholders in diverse areas, including the pharmaceutical industry, medical equipment suppliers, medical institutions, and app developers. To increase the value of healthcare big data and improve its use, it is important to come up with ways to incorporate and merge data in diverse areas rather than disclosing the data collected solely by HIRA. We at HIRA will continue doing our best to increase our data by working in partnership with other relevant institutions to merge data and use it for the promotion of national health.