Designing With, Not For: Stakeholder-Centered Approaches to Disability Health Data

July 22, 2025 | Margaret Nilz

Understanding the impacts of public health issues on people with disabilities requires data and evidence. However, our data systems are not optimized for disability data collection. For example, there is no universally accepted method for collecting data on people with disabilities. Yet, disaggregated data by disability status and type are essential for identifying health disparities and the structural factors that contribute to them. These data inform the development, evaluation, and improvement of public health research, programs, and policy.

In collaboration with the Council of State and Territorial Epidemiologists (CSTE), ASTHO conducted a landscape assessment of health data systems to help health agencies and researchers better understand the intersection of disability and health. This assessment of the broader public health data landscape reviewed challenges, opportunities, and best practices in utilizing existing data systems to enhance the understanding of the health needs of people with disabilities. The project included a literature review, insights from a technical assistance group (TAG), key informant interviews (KIIs), and the development and pilot testing of a tool to evaluate the usefulness of data systems for understanding the health needs of people with intellectual and developmental disabilities. Stakeholder engagement was central to this project. Health agencies can adopt this crucial strategy when reviewing, evaluating, and framing data to better understand the health needs of people with disabilities. Health agencies can use the stakeholder engagement methods demonstrated in this project to gather input from subject matter experts and disabled voices in their own communities.

Insights from Stakeholders: Elevating Inclusion, Collaboration, and Lived Experience

In all disability work, it is essential to center the voices of people with disabilities. To ensure the disability community was included in this project, the perspectives of those with firsthand experience navigating intellectual and developmental disabilities data challenges guided each component. The TAG, composed of individuals with lived experience and data expertise, helped shape priorities, identify gaps, and ensure a people-centered approach. Invitees to the TAG were identified through the literature review for their experience in disability and health data research, familiarity with various data systems and sets, and personal lived experience. Additional invitees were identified through direct feedback and recommendations from group members and were included in the process. TAG participants were invited through an application process and awarded an honorarium for participating in six monthly meetings and for additional time spent reviewing materials between meetings. ASTHO worked to ensure that TAG meetings were held in an accessible manner, providing meeting materials in advance along with ASL interpretation and human captioning during meetings. Additionally, a series of KIIs with researchers, public health officials, data managers, advocates, and caregivers uncovered consistent themes reinforcing the importance of equity, interoperability, and ethical data practices. In all KIIs, individuals with disabilities and lived experiences were included in the interview sessions.

These engagements provided more than just technical insights; they fostered connection and collaboration. Several TAG members attended the CSTE Annual Conference to share this work and engage with epidemiology professionals, forging new relationships and enhancing visibility for disability-inclusive public health efforts. Similarly, every KII concluded with participants connecting with each other to collaborate in the future, highlighting how inclusion naturally facilitates partnership-building.

As health agencies strive to create more inclusive data systems that incorporate lived experience perspectives, a few key goals are essential for success:

• Trust, Ethics, and Privacy: Meaningful involvement requires more than just an invitation — it requires creating spaces where people feel safe, respected, and informed. This includes clearly communicating how input will be used, ensuring accessibility, and being transparent about decision-making power. It also involves ensuring accurate representation throughout stakeholder engagement. Ethical engagement also means honoring privacy, particularly when individuals are asked to share personal or sensitive experiences. Trust is built when participants see their perspectives valued, protected, and acted upon.
• Lived Experience and Decision-Making: Engagement is most meaningful when people with disabilities are consulted and embedded in decision-making. For successful and inclusive public health action, there is a need for roles that recognize and compensate for lived experience and long-term strategies to support inclusive leadership in data initiatives. Acknowledging intersectionality within disability communities is essential. People with disabilities have a range of unique experiences and identities that shape their lived experience. Additionally, people with disabilities bring not only lived experience, but also professional expertise and research skills. Their full participation enriches the quality and relevance of the work, reinforcing the value of diverse perspectives in shaping data-driven initiatives.
• Building Bridges: One of the most tangible outcomes of this stakeholder-driven process was the creation of new connections. Participants often expressed that they were inspired by others doing similar work but frequently lacked pathways to collaborate across sectors. TAG meetings and key informant interviews not only gathered input — they sparked momentum. In nearly every conversation, stakeholders left with a renewed sense of community and a contact they planned to follow up with, reinforcing the value of structured spaces for relationship-building in public health.

These insights reinforced that public health action can be stronger, more accurate, and more equitable when the whole community has a seat at the table.

The path forward is not solely technical; it is relational. As the landscape of disability and data evolves, so must our approach to collecting, linking, and applying it. Stakeholder insights — from the TAG and KIIs — highlight the critical need for public health action that is inclusive by design, ethically grounded, and informed by those with lived experience. Building connections between stakeholders, ensuring representation of people with disabilities in decision-making roles, and fostering cross-sector partnerships are not ancillary activities; they are essential to sustainable, equitable change.

By continuing to elevate lived experiences, break down silos, and invest in collaborative solutions, jurisdictions can help ensure that disability data becomes not only more available but also more actionable and person-centered.