Exploring the Value and Policy Applications of National Statistics-Based Health Indicators for People with Disabilities

The Ministry of Health and Welfare hosted the '2026 Disability Health Statistics Conference' on October 29 from 1:30 PM to 5 PM at the National Rehabilitation Center in Gangbuk-gu, Seoul.

The event aimed to leverage national-level big data on disability health accumulated since 2016 to accurately diagnose health disparities in the healthcare field and transform these insights into effective national policies and performance management indicators.

The first session, chaired by Ho Seung-hee, director of the National Rehabilitation Center's Rehabilitation Research Institute, featured three presentations addressing multifaceted data interpretation, policy applications, and qualitative transformations of health indicators.

Kim Ye-soon, a researcher at the National Rehabilitation Center's Health Research Division, explained that they are mining and linking comprehensive big data from the Social Security Information Service, the National Health Insurance Corporation, and the National Data Agency to produce statistics across eight sectors and 104 items.

According to data from 2024 presented by Kim, the health check-up rate for people with disabilities was 63.4%, which is 12.3 percentage points lower than that of non-disabled individuals (75.7%). Significant gaps were also observed in cancer screenings (46.4% vs. 59.6%) and oral examinations (17.8% vs. 26.9%). The largest disparities in cancer screenings were for cervical cancer (-23.5 percentage points) and breast cancer (-19.1 percentage points), with a 41.4 percentage point difference in screening rates between individuals with facial disabilities (54.9%) and those with autism (13.5%). The general health check-up rate for individuals with severe disabilities was 53.7%, showing a 22.0 percentage point difference compared to non-disabled individuals.

In terms of healthcare utilization, the average annual number of hospital visits for people with disabilities was 55.7 days, 2.8 times that of non-disabled individuals (20.1 days), while the average length of hospital stays was 20.2 days, 9.6 times longer than that of non-disabled individuals (2.1 days). The prevalence of chronic diseases was 90.6% among people with disabilities, compared to 62.0% for non-disabled individuals, and the mortality rate per 100,000 population was 3,638.7, 5.2 times higher than the overall population rate (702.6).

Notably, the mortality rate for disabled individuals aged 10 to 19 was 15.8 times that of the general population in the same age group. Kim emphasized that high healthcare utilization does not necessarily indicate good access to healthcare, stating, "We need to move beyond differences in screening rates and utilization to explain who, where, and why opportunities for health discovery are missed, and how these disparities are created."

Eun Seon-deok, a researcher at the National Rehabilitation Center's Health Research Division, pointed out that while healthcare data is accumulating, there is a lack of public health surveillance indicators that reflect daily constraints, accessibility, and unmet needs, and that data fragmentation due to inter-departmental silos persists.

Eun introduced successful international policy examples, such as the CDC's DHDS prioritization of fall prevention projects in Ohio, the UK's use of the ONS census for strategic needs assessments in Hartlepool, and Australia's SDAC survey for monitoring disability strategy outcomes.

Based on these examples, she proposed five key roles for health indicators: national policy evaluation, identifying local health disparities, assessing project outcomes, data-driven budget allocation, and monitoring health equity. Additionally, she outlined five enhancement tasks for the National Rehabilitation Center: ▲ improving timeliness through shortened publication cycles (with a goal to publish 2030 statistics by March-April 2032) ▲ expanding customized statistics for local governments ▲ developing international comparison indicators in line with WHO and OECD standards ▲ establishing new policy performance indicators ▲ and creating an AI-based platform for predicting secondary complications and regional simulations.

Choi Min-hyuk, a professor at Pusan National University College of Medicine, defined indicators as functioning only when numbers are combined with causes, trends, and accountability for policy interventions. He categorized the health determination process into 'social determinants → risk factors/behaviors → healthcare access/utilization → diseases/functions → final outcomes (mortality).' He explained that policies should intervene upstream (determinants) and be evaluated downstream (mortality), necessitating organic interpretations across stages.

Choi emphasized the need to measure both 'absolute gaps (differences)' and 'relative gaps (ratios)' when assessing inequalities. He noted that from 2018 to 2024, the absolute gap in general health check-up rates expanded to 12.3 percentage points, while the relative gap remained at 0.84. Although the gap in chronic disease prevalence decreased in both absolute (36.1 percentage points to 28.6 percentage points) and relative terms (1.75 to 1.46), he cautioned that the addition of chronic respiratory diseases in 2023 should be considered.

Choi also proposed calculating 'avoidable mortality' based on OECD and Eurostat standards, suggesting that 'preventable deaths' and 'treatable deaths' should be separately calculated. He stated, "Attributing the high mortality rate of people with disabilities solely to their 'underlying conditions' excludes them from policy interventions," adding that separating treatable mortality rates allows for an assessment of whether the healthcare system provides timely and quality care fairly, directing accountability towards the healthcare system rather than individuals.

The second session, moderated by Shin Yong-il, a professor at Yangsan Pusan National University Hospital's Department of Rehabilitation Medicine, featured in-depth discussions between field practitioners and policy experts on improving the quality of statistics and linking them to policy outcomes.

Ha Yu-jin, an official from the Health Administration Division of Gyeongsangnam-do, noted that while some statistics are provided at the city and county level, there is a lack of detailed indicators, limiting the planning of tailored health management projects at the local government level. She called for the provision of detailed statistics on health behaviors, metabolic syndrome, and causes of death by local government. Additionally, she proposed the establishment of indicators for the utilization of rehabilitation services such as physical and occupational therapy, as well as oral health habits. She emphasized the need for statistics on 'unmet healthcare utilization rates and reasons for missed screenings' to determine effective policy measures, especially since nearly half of disabled individuals are non-compliant due to transportation issues or the absence of facilities and sign language interpretation.

Lee Kyu-beom, director of the Northern Seoul Disability Health Center, stressed the importance of linking statistics with frontline services such as community-based rehabilitation (CBR) and public children's rehabilitation hospitals. He suggested organizing detailed statistics by disability type every five years as an appendix, noting that different health characteristics exist even within categories of physical disabilities, such as spinal cord injuries and amputations, as well as among brain injuries like cerebral palsy and strokes. He also called for the integration of community health survey systems with health center CBR projects and urged the formation of a public-private joint task force involving the National Rehabilitation Center, local centers, and disability organizations to regularly gather field-centered statistical lists.

Yoon Da-ol, senior team leader at the Korea Disabled People's Federation, stated that the health of people with disabilities is significantly influenced not only by healthcare utilization but also by social factors such as income, housing, and caregiving, thus emphasizing the need to strengthen data linkage with the welfare sector. He called for in-depth analyses of rare disability types, such as those with ostomies, and for women with disabilities, who have a general health check-up rate of 59.1%, which is 7.2 percentage points lower than that of male individuals with disabilities (66.3%), and who incur an average out-of-pocket expense approximately 214,000 won higher. He also urged the development of performance indicators to demonstrate health improvement effects before and after participation in key projects like health primary care, enhancing accessibility to the extensive statistical compendium exceeding 700 pages, and institutionalizing the participation of disabled individuals throughout the entire statistical production process.

Lee Yeon-gyeong, director of policy development at the Korea Health Promotion Institute, outlined the structure of performance indicators for disability-related tasks within the 6th Comprehensive National Health Promotion Plan (HP2030). She pointed out that all three representative indicators for disability tasks consist of health check-up rates, and that about 30% (10 out of 34) of performance indicators are skewed towards screening utilization. She noted that while the prevalence rates of hypertension (55.4%) and diabetes (37.2%) among disabled individuals are 2 to 3 times higher than the general population, discrepancies in indicator definitions between national approved statistics and HP2030 limit the use of official statistics, calling for standardization of definitions. She also proposed establishing systems for calculating chronic disease control rates, dietary and nutrition indicators, and life expectancy and health expectancy calculations for long-term performance management.

Shin Jeong-woo, director of the Medical Workforce Supply and Demand Forecast Center at the Korea Institute for Health and Social Affairs, emphasized that the indicator system should not merely be a list of calculable statistics but should be rearranged within a conceptual framework that reflects the goals and functions of the healthcare system. He stressed the need for a paradigm shift from 'what can be measured' to 'what should be measured,' suggesting the establishment of around 10 to 15 'representative health indicators for people with disabilities' in line with the comprehensive disability health management plan and HP2030 to enhance coherence between plans. He also recommended incorporating the concept framework for disability health indicators into the 4th Basic Plan for the Development of National Statistics (2028-2032).

In the concluding discussion, Kim Seong-cheol, head of the Disability Health Division at the Ministry of Health and Welfare, stated, "In line with the 1st Comprehensive Plan for Disability Health Management (2026-2030), we are advancing the analysis of healthcare utilization and medical expenses by type of care institution, distinguishing disability registration status in community health surveys conducted by the Disease Control Agency. We will actively incorporate the suggestions made today regarding city, county, and district segmentation and qualitative indicator improvements to ensure that statistics lead to actual policy and infrastructure improvements in the field."

Following the presentations, a separate Q&A session allowed disabled individuals present to share their experiences and policy suggestions.

One individual with severe cerebral palsy took the microphone to express the harsh barriers faced during screenings. He stated, "To properly undergo the colonoscopy, which is deemed essential in regular check-ups, one must undergo an endoscopy, but it is incredibly difficult for individuals with severe disabilities to do so. Preparing for a colonoscopy requires taking bowel cleansing agents and frequent trips to the restroom, which is a very challenging process for someone with severe cerebral palsy, leading to the abandonment of the endoscopy in favor of only a stool occult blood test." He added, "As you set the tasks of 'what to show and what to want to show' and 'what to know and what to want to know' in today's presentation, I appreciate the concrete tasks presented to address the health issues faced by disabled individuals in their daily lives."

Another attendee pointed out the accessibility and convenience facility limitations for individuals with cognitive disabilities, suggesting policy alternatives. He stated, "Individuals with cognitive disabilities, such as those with autism and intellectual disabilities, find it extremely difficult to access hospitals, so I would like to propose establishing one special hospital in each province focused on screening for these individuals." He also inquired whether there are pathways to extract data from rehabilitation hospitals where many disabled individuals receive prescriptions. He noted, "There are two major challenges for individuals with severe physical disabilities in accessing hospitals: first, the physical accessibility issue, where examination rooms are on the second floor or hospitals are too narrow for wheelchairs, forcing them to endure humiliation while receiving treatment outside; and second, the lack of medical equipment tailored to their disabilities, such as machines that allow for comfortable sedation during imaging procedures, which is common in other countries." He called for government and research institutions to address these issues.

In response, Ho Seung-hee, director of the National Rehabilitation Center's Rehabilitation Research Institute, expressed deep empathy for the attendees' concerns and explained the direction of disability health research and statistics. He stated, "Current statistics cannot fully capture all field situations, and what is shown is only a part of the whole. We will strive to expand statistics to better understand the causes, processes, and alternative solutions that we truly want to know." He emphasized the necessity of systematically gathering research on the specific difficulties faced by disabled individuals during screenings and the support they require to present as policy evidence.

Ho noted that analysis of screening result data shows that the proportion of individuals with findings and diseases is overwhelmingly higher than that of non-disabled individuals, yet the screening rates themselves are very low, with significant disparities by disability type. He added, "While it may appear that healthcare is being utilized extensively, the unmet healthcare demand rate, which reflects those who 'cannot go even when they should,' is also much higher than that of non-disabled individuals. Considering the actual healthcare needs, the demand for support is even greater." He explained that from a financial perspective, "Although the disabled population accounts for about 5%, they represent 17-18% of health insurance expenditure, and their medical expenses are four times higher than the average for non-disabled individuals."

Ho reiterated the heterogeneity among disability types, stating, "Individuals with kidney disabilities who frequently undergo outpatient dialysis incur the highest medical expenses and outpatient days, while those with brain injuries or mental disabilities experience prolonged hospital stays. Therefore, providing uniform services across all disability levels or types is nonsensical, and individualized approaches are essential." He concluded by stating, "Our research began with the shocking fact that the mortality rate for disabled individuals is five times higher than that of non-disabled individuals. We are continuously researching the calculation of life expectancy and health expectancy indicators and closely examining the operational status of specialized hospitals for individuals with developmental disabilities to ensure that statistics serve as a solid benchmark for evaluating the actual outcomes and results of government policies."