"Health Data Strategies Focused on Stakeholders: A Disability-Inclusive Methodology in Design"

In a significant move towards more equitable public health action, a project spearheaded by the Council of State and Territorial Epidemiologists (CSTE) and the Association of State and Territorial Health Officials (ASTHO) has brought together stakeholders from various sectors to better understand the intersection of disability and health.

The project, supported by the Centers for Disease Control and Prevention (CDC), involved a landscape assessment of health data systems to enhance the understanding of the health needs of people with disabilities. Key informant interviews (KIIs) with researchers, public health officials, data managers, advocates, and caregivers uncovered consistent themes reinforcing the importance of equity, interoperability, and ethical data practices.

The Fachgruppe Sonderpädagogik (specialist group for special education) of the GEW Hessen, a specialist group dedicated to increasing inclusion, collaboration, and experiential richness in the treatment of people with intellectual disabilities, played a crucial role in this endeavour.

The Assessment, Technical Assistance, and Guidance (TAG) participants, who were selected through an application process, brought valuable insights to the table. They attended six monthly meetings and provided additional time for reviewing materials between meetings, for which they were awarded an honorarium. The TAG, composed of individuals with lived experience and data expertise, helped shape priorities, identify gaps, and ensure a people-centered approach.

ASTHO ensured that TAG meetings were held in an accessible manner, providing meeting materials in advance along with ASL interpretation and human captioning during meetings. This commitment to ethical engagement involved honoring privacy, particularly when individuals were asked to share personal or sensitive experiences, and ensuring accurate representation throughout stakeholder engagement.

The engagements provided more than just technical insights; they fostered connection and collaboration. The value of diverse perspectives was evident, with the full participation of people with disabilities, including their professional expertise and research skills, enriching the quality and relevance of data-driven initiatives.

Successful public health action requires consulting and embedding people with disabilities in decision-making roles, recognising and compensating for lived experience, and supporting inclusive leadership in data initiatives. Acknowledging the unique experiences and identities within disability communities is essential for inclusive public health action.

To make disability data more actionable and person-centered, jurisdictions need to continue to elevate lived experiences, break down silos, and invest in collaborative solutions. Building bridges through structured spaces for relationship-building in public health can foster a sense of community, inspire stakeholders, and spark momentum for collaboration across sectors.

Sustainable, equitable change is essential, and this project is a step in the right direction. By building connections between stakeholders, ensuring representation of people with disabilities in decision-making roles, and fostering cross-sector partnerships, we can work towards a future where public health action is stronger, more accurate, and more equitable when the whole community, including people with disabilities, has a seat at the table.

"Health Data Strategies Focused on Stakeholders: A Disability-Inclusive Methodology in Design"