Open access to research can close gaps for people with disabilities

In a long-overdue move, the federal Office of Science and Technology Policy has issued guidance on making federally supported research and publications available to all without delay or embargo. This remarkable announcement about open access has the potential to remove information barriers that have long held back social and scientific progress.

Even with immediate open access to research results, however, people with disabilities face unique barriers to information access. These issues must be considered as this policy takes shape.

As disabled researchers with vision impairments, we do not have equitable access to scientific information. This includes barriers to accessing data and peer-reviewed publications, which too often are not available in accessible formats. This gap in access is in opposition to federal laws, including the Americans with Disabilities Act and the Rehabilitation Act, which support equal access to information.

But scientific information is not limited to downloading journals and databases. Accessing research data can mean using online software, interactive websites or maps, and attending webinars or conferences. When scientific results are not accessible, people with disabilities — researchers, policymakers, advocates, and others —are blocked from full access to information, limiting their research knowledge, participation, and inclusion.

The impact of inequitable access to research information cannot be overstated. People with disabilities are grossly underrepresented across science. Although 27% of U.S. adults have a disability, only 9% of the scientific workforce is disabled. Over the past decade, less than 2% of funded investigators from the National Institutes of Health and less than 1% from the National Science Foundation report having a disability. Access to research data, publications, and other forms of information is critical to grantsmanship. Ensuring this information is accessible will help close these gaps in the scientific workforce.

As plans are developed to open access to research results, the accessibility of information and data for people with disabilities must be a core component of open and universal access. In addition to ensuring compliance with established laws, this would support efforts outlined in two of President Biden’s executive orders, both of which include a focus on people with disabilities: one on advancing equity across society through actions of the federal government and the other on promoting federal diversity equity, inclusion, and accessibility efforts — both of which include a focus on people with disabilities.

We propose three key ways to do this.

More training on accessibility principles and universal design. Despite Website Content Accessibility Guidelines and guidance from the Department of Justice, there is limited understanding of the basic principles of accessibility, information access, and universal design across science and research. Federal agencies and research institutions should outline plans to close this gap in support of creating publicly available research data and information. Education and training should focus on principles of universal design, provide a basic understanding of communication and information accessibility, and review best practices to support inclusion, such as alternative text for non-textual content like figures and images, captioning for videos, and plain language summaries. These efforts will potentially be even more important as the Department of Justice undertakes rulemaking around website accessibility standards for state and local governments.

Include accountability and sustainability structures. In developing approaches to enhance the accessibility of research information and data, federal agencies should look for opportunities to create structures of accountability both internally and externally. Internally, federal agencies should audit current strategies for making research information and tools accessible; support the development of new and improved approaches; and share best practices. Externally, federal agencies should adopt requirements that incorporate accessibility plans as part of research grant applications, an approach already put in place by the National Institute on Disability, Independent Living, and Rehabilitation Research; collect and share data to determine gaps and exemplars of research information accessibility; and disseminate guidance on research information accessibility to the public. Steps should also be taken to sustain these accessibility strategies, such as establishing roles to oversee these efforts, allocating sufficient resources to support accessibility, and creating methods to monitor progress and make continuous improvements.

Involve the disability community in this process. It is paramount that federal agencies and research institutions work with the disability community as they develop strategies to ensure research is publicly available and accessible. This should include disabled researchers, advocates, and policymakers, and ensure representation across a diversity of disability perspectives and intersecting underserved identities. Through this insight, the policies on research information sharing will have far greater reach.

The guidance from the Office of Science and Technology Policy provides an opportunity to advance equity across many aspects of society through sharing scientific information. It is essential that federal agencies and research institutions embrace this chance and use it to close inequities for people with disabilities.

Bonnielin K. Swenor is director of the Johns Hopkins Disability Health Research Center and associate professor at the Johns Hopkins School of Nursing, the Wilmer Eye Institute at Johns Hopkins School of Medicine, and the Johns Hopkins Bloomberg School of Public Health. John-Ross (JR) Rizzo is a physiatrist and vice chair for equity and innovation in the Department of Rehabilitation Medicine and an associate professor of physical medicine and rehabilitation and neurology at the NYU Grossman School of Medicine, and an associate professor of biomedical and mechanical engineering at the NYU Tandon School of Engineering.