Creating Inclusive Disability Data Systems

July 14, 2025 | Maggie Nilz, Zeeshawn Chughtai

Modernizing how public health systems collect, exchange, and apply disability-related data is essential to designing inclusive, adaptive, and responsive infrastructure. Across today’s fragmented data landscape — spanning administrative claims, electronic health records, surveys, and public health program databases — valuable disability data often remain siloed, inconsistently structured, or underleveraged. A wide array of data sets and systems could be better utilized to understand the health needs of people with disabilities. However, varying definitions, a lack of standards and governance, and inconsistent application continue to generate uncertainty for public health agencies.

A data modernization approach starts to address these limitations by emphasizing standardized data elements, platform interoperability, system usability, and purposeful design. This enables decision-makers to better understand the health needs of people with disabilities.

State Innovations Leading the Way

State health agencies are already demonstrating leadership in aligning modernization strategies with more comprehensive disability data practices. In Colorado, HB 22-1157 authorized the Colorado Department of Public Health and Environment to collect enhanced demographic data, including disability status, across local health agencies and state programs. This legislation aims to ensure more accurate population representation, inform public health resource allocation, and support community planning. This policy was highlighted in ASTHO’s 2023 Legislative Prospectus on Data Modernization, which examines how legislative levers can support sustainable infrastructure development.

Missouri’s Department of Health and Senior Services, meanwhile, became the first state-level public health agency globally to apply the Healthcare Information and Management Systems Society’s Digital Health Indicator to assess digital maturity as documented in the 2025 Missouri Data Landscape Survey, Maturity Evaluation and Strategic Assessment. The assessment revealed key strengths and limitations in privacy, integration, and predictive analytics, offering a roadmap to build more inclusive, technology-enabled systems.

Applying Common Themes of Data Modernization

Agencies can enhance the inclusion of disability data by reflecting common themes of data modernization — interoperability, sustainability, transparency, and responsiveness — into system design and evaluation. These themes are reflected in national guidance such as CDC’s Public Health Data Strategy and tools like the National Academy for State Health Policy’s Public Health Modernization Toolkit.

Interoperability

Interoperability allows different systems to work in conjunction with one another, allowing for better sharing of data and improved health services. Interoperability hinges on aligning with federal efforts such as the CDC’s Data Modernization Initiative and advancing standards like Fast Healthcare Interoperability Resources (FHIR) and United States Core Data for Interoperability Plus (USCDI+). These promote efficient, secure data exchange across clinical and public health sectors. FHIR provides a standardized framework for exchanging health information electronically, facilitating data sharing between health care providers and public health agencies. USCDI+ establishes harmonized data element lists tailored to public health needs, ensuring that critical data — including disability-related information — is consistently captured and exchanged across systems. The Trusted Exchange Framework and Common Agreement further supports secure national data sharing by providing a governance structure to enable standardized, secure data exchange across health care providers, payers, and public health agencies, helping integrate disability identifiers across systems.

Sustainability

Sustainability develops resilient and long-lasting data systems, which creates more robust and consistent public health infrastructure. Achieving sustainability involves investments in platforms like the CDC’s Disability and Health Data System and funding streams like the Public Health Infrastructure Grant (PHIG). Launched in 2022 with a landmark investment of $255 million to state, tribal, local, and territorial health agencies to modernize public health infrastructure, PHIG supports workforce development, system interoperability, and technological upgrades — critical areas that enhance the integration and utility of disability-related data. By sustaining the core capacity of public health agencies to utilize modern data tools, PHIG can empower jurisdictions to integrate disability data into comprehensive, resilient infrastructure enhancements that last beyond one-time funding cycles.

Transparency

Transparency within data systems promotes accountability and community trust, making it clear how health data is collected, used, and protected. It is reinforced through tools like the National Core Indicators, which publish comparative performance data across human service systems. State health agencies and public health partners are also investing in strong data governance that encourages transparency and accountability while maintaining privacy and confidentiality. Supporting resources like the 2020 Federal Data Governance Playbook and Public Health Informatics Institute training help agencies implement strong governance frameworks for ethical and open data practices. State health agencies also promote transparency by engaging disability stakeholders in planning discussions and communicating how disability data will be utilized. Individuals with disabilities should receive clear information in plain language about how their data will be used and safeguarded.

Responsiveness

Responsiveness means designing systems that can adapt to needs in real time —especially during crises — so people aren't left behind in public health responses. Local health departments like Champaign-Urbana Public Health District and Northwest Michigan Health Department found success in leveraging NACCHO’s Mobilizing for Action through Planning and Partnerships strategic planning process to drive development of community health assessment and improvement plans. By creating accessible surveys in multiple formats, these local health departments were able to collect primary and secondary data on the health needs of people with disabilities. These approaches illustrate how modernized disability data systems can improve not only health planning but also emergency preparedness, facilitating timely surveillance and response deployment during public health emergencies. Surveillance systems like the National Notifiable Diseases Surveillance System, the National Electronic Disease Surveillance System and its Base System, when linked to electronic case reporting and integrated with disability identifiers, can enhance timely public health responses. The growing adoption of electronic case reporting has improved these systems by allowing the automatic, standardized transmission of case data from clinical settings to public health authorities. Incorporating disability identifiers into these systems can enhance the timeliness and completeness of surveillance data, facilitating more targeted response planning for people with disabilities during outbreaks, emergencies, or other urgent public health situations.

A Vision for Integrated, Inclusive Systems

Data equity and disability inclusion must be built into the core of public health systems, not treated as an afterthought. When systems are connected and representative, agencies are better positioned to allocate resources, tailor interventions, and measure impact.

Improving state-level data collection, adopting inclusive methodologies, and treating disability as a core demographic variable are essential to better understand the health needs of people with disabilities. Through these improvements, health agencies can design data systems that recognize, reflect, and better serve the full diversity of our communities.