Lack of disability data impedes health care equity

The missing billion: Lack of disability data impedes healthcare equity

Around the world, 1.3 billion people, or 16 percent of the population, are living with significant disabilities, according to the World Health Organization (WHO).¹ By and large, these individuals experience more barriers to accessing healthcare than the general population (see sidebar “Defining ‘disability’ and effects on care access and outcomes”). As a result, the United Nations’ goal of “ensuring healthy lives and promoting well-being for all at all ages” will be very difficult to achieve.²

Defining ‘disability’ and effects on care access and outcomes

There are many types and categorizations of disabilities. According to the World Health Organization, disabilities result from the interactions between individuals with an impairment and personal and environmental factors, including negative attitudes, inaccessible transportation and public buildings, and limited social support.¹ Impairments can be physical, mental or psychosocial, intellectual, and sensory.

Additionally, people with disabilities often have greater care needs, in part because they develop health conditions due to their impairments or underlying health (for example, immobility caused by a stroke could result in bedsores). They also are more likely to belong to cohorts with greater healthcare needs. For example, people with disabilities are older, on average, than the general population²; therefore, they are more likely to have chronic diseases or other conditions that necessitate more care. The prevalence of disabilities is also higher in women, who face greater barriers accessing health services in some settings,³ and the poor, who experience overall worse health as a result.⁴

On average, people with disabilities have substantially worse health outcomes, with a mortality rate twice as high as the general population’s and a life expectancy that is ten to 20 years shorter.⁵Reimagining health systems that expect, accept and connect 1 billion people with disabilities, Missing Billion Initiative and Clinton Health Access Initiative, 2022; “People with learning disabilities had higher death rate from COVID-19,” UK Health Security Agency, November 12, 2020; Maarten Cuypers et al., “All-cause and cause-specific mortality among people with and without intellectual disabilities during the COVID-19 pandemic in the Netherlands: A population-based cohort study,” Lancet, May 2023, Volume 8, Number 5. This is due in part to disparities across the whole patient journey (for example, the ability to access and pay for services). In a survey conducted in five countries (Brazil, France, Japan, the United Kingdom, and the United States), people with a disability also reported greater distrust of the healthcare system than the general population (73 percent compared with 56 percent). Among ethnic minorities and people of color who are also disabled, the disparity is even higher (82 percent compared with 52 percent who are neither).⁶

People with disabilities have a right to add years to their lives and life to their years through better health.³ McKinsey Health Institute,” McKinsey, accessed August 22, 2023. Closing health outcome gaps between populations with and without disabilities—in all dimensions of health (physical, social, mental, and spiritual)—calls, first and foremost, for good data. However, there are sizable and persistent gaps in health data with respect to people with disabilities.⁴Adding years to life and life to years, McKinsey Health Institute, March 29, 2022. In a 2023 review of data sets across 188 countries, 63 had no data sets with functional-difficulty questions⁵ between 2009 and 2022.⁶ As described in the McKinsey Health Institute’s (MHI) six shifts to reach the full potential of human health,⁷Adding years to life and life to years, McKinsey Health Institute, March 29, 2022. better data is needed to do the following:

raise awareness of the scale and nature of disparities in health outcomes; measurement is foundational to improvement
determine, and build awareness of, the benefits of improving health equity and outcomes for people with disabilities⁸ Equity and Health,” McKinsey Health Institute, accessed August 22, 2023.
identify and quantify the healthcare access barriers experienced by people with disabilities
determine ways to close the health outcome gap by using data to inform and scale “what works” given that interventions often do not translate into action⁹ Scale what works: The benefits of proven health interventions,” McKinsey Health Institute, March 29, 2022.
establish a baseline with standardized measurements, set targets, and monitor the progress of interventions

About the Missing Billion Initiative and the McKinsey Health Institute

The Missing Billion is a global initiative committed to improving access to health for the 1.3 billion people around the world who have disabilities. The McKinsey Health Institute (MHI) is a non-profit-generating entity of McKinsey and includes health equity as a focus area.

The Missing Billion and MHI are working in partnership to accelerate the movement on inclusive health and develop use cases across countries. A foundational part of this effort is jointly publishing novel insights to demonstrate the health data, access, and outcome gaps for people with disabilities globally.

MHI is working with the Missing Billion Initiative to address health system challenges and close this gap in health data and equity (see sidebar “About the Missing Billion Initiative and the McKinsey Health Institute”).¹⁰ In this first report, we explore how a lack of health data exacerbates the challenges of meeting the needs of people with disabilities. We also share analysis of the maturity levels of different countries with respect to data collection and usage, and we outline actions stakeholders could take to close the health data equity gap.

Author’s note on methodology: In May 2023 we conducted a data maturity index assessment of nine countries: Australia, Brazil, Canada, France, Malawi, South Africa, Thailand, Uganda, and the United Kingdom. The maturity scale was developed based on the strength of each country’s main data collection methods in closing the disability health data gap and how well the data is used. We also identified actions countries could take to improve data maturity and actions different stakeholder groups could take to help overcome the gap in disability health data.

Read our full report.