According to the World Health Organization (WHO), 1.3 billion people worldwide, or 16 percent of the population, live with a severe disability. These people typically face more barriers to accessing health care than the general population (see sidebar, “Defining ‘disability’ and its impact on health care access and outcomes”). As a result, achieving the UN goal of “ensuring healthy lives and promoting well-being for all at all ages” is extremely challenging.
People with disabilities have the right to live longer and more fulfilling lives through better health. Reducing the health gap between people with and without disabilities requires, first of all, good quality data on all dimensions of health (physical, social, mental and spiritual). However, significant gaps remain in health data on people with disabilities. In a 2023 review of datasets across 188 countries, 63 countries had no datasets that included questions on functional difficulties between 2009 and 2022. As explained in the McKinsey Health Institute (MHI) article “Six shifts to unlock the full potential of human health,” better quality data is needed to:
Increase awareness of the magnitude and nature of health outcome disparities. Measurement is the basis for improvement. Determine and raise awareness of the benefits of improving health equity and outcomes for people with disabilities. Identify and quantify barriers to health care access experienced by people with disabilities. Determine how to eliminate health outcome disparities by using data to inform and amplify “what works,” given that interventions often go unactioned. Establish baselines with standardized measurements, set goals, and monitor progress of interventions.
MHI is partnering with the Missing Billion Initiative to address challenges in the health system and close the health data and equity gap (see sidebar, “About the Missing Billion Initiative and the McKinsey Health Institute”). This first report explores how a lack of health data exacerbates the challenge of meeting the needs of people with disabilities. It also shares an analysis of countries’ maturity in data collection and use, and outlines actions stakeholders can take to close the health data equity gap.
Author’s note on methodology: We conducted a Data Maturity Index assessment in May 2023 across nine countries: Australia, Brazil, Canada, France, Malawi, South Africa, Thailand, Uganda, and the UK. The maturity scale was developed based on the strength of each country’s primary data collection methods to close disability health data gaps and how effectively the data is being used. We also identified actions that countries can take to improve their data maturity, and actions that different stakeholder groups can take to overcome disability health data gaps.
Read the full report.