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‘Disability Data Justice’ Approach Needed for Public Health Infrastructure

A recent Health Affairs article outlines six recommendations on how public health infrastructure can support data collection for people with disabilities.

As the industry looks to advance public health infrastructure to support health equity, people with disabilities are at risk of being de-prioritized, according to a Health Affairs article written by Bonnielin K. Swenor.

While more than 27 percent of US adults have a disability, there is limited COVID-19 data for this community. Available data have come from people with disabilities living in congregate care settings, nursing homes, or are limited to people with intellectual and developmental disabilities.

While this data has provided critical insight, there are important lessons to be learned about the limitations of this information.

Gaps in disability data within EHRs have prevented the surveillance of COVID-19 testing, vaccination, and mortality among people with disabilities, Swenor explained.

“These disability data gaps have removed opportunities for evidence-based policies and limited the reach of the pandemic response for people with disabilities,” she added.

Swenor noted that a “disability data justice” approach is urgently needed as the industry looks to restructure public health data systems.

She presented six recommendations to reach this goal.

1. Disability Data Must Be A Core Dimension Of All Demographic Information

Like race, ethnicity, and gender identity, disability is a social construct, Swenor said. Therefore, public health data must collect disability as a core element.

There is precedent for this approach, she pointed out. In 2010, the Affordable Care Act required all national federal data systems to collect information on race, ethnicity, sex, primary language, and disability status.

Since then, HHS has guided disability data collection, recommending using six questions already in place across many national surveys.

2. Disability Data Collection Should Be Comprehensive

Swenor said that disability data collection should not be limited to disability-specific issues.

“Public health uses a wide swath of information and increasingly leverages linked data sets and big data resources,” she said. “Therefore, disability information must be included across all data systems and settings, including health care, food access, housing, transportation, education, employment, voting, climate change, and artificial intelligence.”

“Only with broad disability data collection can the root causes of ableism and inaccessibility be identified and addressed,” Swenor wrote.

3. Public Health Must Have a Growth Mindset About Disability Data

The author noted that while there will always be opportunities to improve disability data collection, this should not prevent the current use of disability information. Public health officials must recognize that the disability community, like all communities, will evolve, and data collection methods and strategies may need to be updated to reflect these changes.

For instance, long COVID, newly recognized as a disability, requires additional data collection to characterize and understand the impact of this syndrome.

4. Partnerships With The Disability Community Are Needed

Swenor said that public health efforts that directly impact the disability community must be centered on the disability community. This community must inform the development, planning, and rollout of disability data collection.

“It is equally important to understand that all public health issues are also disability issues,” she added. “Partnerships with the disability community must be formed with health departments and agencies to ensure that the perspectives of people with disabilities are included in all levels of public health efforts.”

5. Data Must Be Shared With And Accessible To The Disability Community

Often, public health data are not accessible to people with disabilities, Swenor said. The industry must prioritize equitable access to public health information, including communication, data, and websites.

The Department of Justice recently released guidance and is undertaking rulemaking about website accessibility, which includes public health departments.

6. Diverse Public Health Professionals Are Needed, Including Leaders With Disabilities

The author said efforts to diversify public health often exclude people with disabilities.

“Schools of public health need to include disability as part of their diversity, equity, and inclusion efforts,” Swenor explained. “People with disabilities bring missing perspectives to public health, and the barriers that keep this group out of this field must be torn down.”

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