Better disability data key for 1.3 billion people worldwide

Around 16% of the entire world's population (approximately 1.3 billion people) live with a disability and often have challenges in accessing healthcare. Despite that, some countries still do not even collect data on disabilities.

A lack of health data for disabled patients often makes problems worse, according to a report from McKinsey & Company, a global management consulting firm. Out of 188 countries assessed, 63 were found to have no data on functional-difficulty questions from 2009 to 2022.

The report makes several recommendations on bettering the services offered to those with disabilities and helping to prevent them falling through the cracks of health systems. Those include: Raising awareness on disparities in health outcomes, identifying barriers to care for people with disabilities, and determining ways to close those gaps using data.

Disabilities are more common among people that are also marginalized in some other ways as well. This can make the barriers to healthcare they face even worse. For example, 24% of people with disabilities live below the poverty line, compared with 13% without disabilities. Disabled people are also less likely to be employed, women are more likely than men to be disabled, and nearly half of all people over the age of 60 have a disability.

Despite this, the ways in which disability is measured still fall short around the world. There is no global standard definition of disability. “Data sets built using different data definitions, data formats, collection tools, and administration methods may yield quite different results,” according to the study.

“Lack of consistency in data methods also leads to poor data interoperability, which makes it difficult or impossible to conduct apples-to-apples comparisons across data sets, aggregate data to identify patterns and trends, and otherwise glean meaningful insights (for example, at the local and national levels).”

Countries have made varying degrees of progress in closing the disability data gap. The study assessed the data collection and usage maturity of nine different countries. Of those countries, only Australia and Thailand were found to have both high data collection and high data usage.

“Australia has adopted all the criteria for high-quality data collection noted above. This was achieved by including unique identifiers by disability type in nationwide health information records through integration with national insurance data. As a result, the disability data set is automatically and continually updated,” the study notes.

In contrast, countries like Brazil and Canada have low maturity. They only conduct surveys periodically rather than collecting data more actively, and they do not use that data effectively. With Thailand in the category of high-maturity and Canada considered low-maturity, it is clear that the conventional wisdom of ‘developing’ versus ‘developed’ nations does not really apply in the domain.

“The gap in disability data presents a substantial barrier to achieving health equity,” the study concludes.

“It is crucial for healthcare organizations, governments, donors, implementers, and other stakeholders to prioritize the collection and use of data as a fundamental step toward achieving equitable healthcare for all. By doing so, we can work toward a future in which individuals with disabilities receive the care and support they need.”