A shortfall in disability data

Sixteen percent of the global population lives with significant disabilities, and many of these people experience greater barriers to healthcare access. Yet, a significant portion of countries collect no data on this population, leaving gaps in healthcare equity, partner Sunny Sun and coauthors explain in a report with the Missing Billion Initiative. Closing this gap, they note, requires countries to improve not only their data collection practices but also the updates to those data sets.

Closing the disability data gap requires improvements in data collection and usage. We analyzed nine countries to assess their maturity.

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A dual-access graph highlighting that closing the disability data gap requires improvements in data collection and usage. The chart shows the data maturity index assessment of nine countries: Australia, Brazil, Canada, France, Malawi, South Africa, Thailand, Uganda, and the United Kingdom. The horizontal axis represents data usage, ranging from “1. Little or no data analyzed and reported,” to “3. Data direct policy and program change.” The vertical axis represents data collection methods, including survey data (1) on the lower end, register linked to medical records (2) in the middle, and indicators in medical records (3) on top. Among the nine countries, Australia and Thailand show the highest data maturity index with a score of 3 on both axes while Canada and Malawi are the lowest with a score of 1. A column to the right of the graph provides additional context for three countries and reads as follows:

  • Australia has adopted all the criteria for high-quality data collection. This was achieved by including unique identifiers by disability type in nationwide health information records through integration with national insurance data.
  • In Brazil health information records are neither consistent (some are electronic, while others are still stored on paper) nor aggregated nationally.
  • Canada has low maturity because it relies on survey data and has published analysis of disability and health data in only a few provinces.

Source: Missing Billion; McKinsey Health Institute.

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To read the report, see “The missing billion: Lack of disability data impedes healthcare equity,” September 12, 2023.