The “Missing Billion”: creating health equity through data for people with disabilities

Around the world, people with disabilities face barriers to accessing healthcare—often with major consequences.

“The doctor couldn’t understand that I was pregnant. I was given pain medication for stomachache and sent home,” says a pregnant woman with a hearing impairment.

“I was used to having frequent headaches due to having low vision and was so conditioned to the pain that I did not realize when to seek help. We only got to know about the tumor when it was at a later stage,” says an adolescent with low vision.

These are just a couple of the quotes in the recent report from The Missing Billion Initiative and McKinsey Health Institute (MHI), The missing billion: Lack of disability data impedes healthcare equity. The report explores the impact of countries not collecting adequate data on people with disabilities and their needs.

Ahmed Osman
Ahmed Osman
Ahmed Osman

“We cannot close in on global health equity without clarity on what health challenges people with disabilities face,” said Phyllis Heydt, co-founder of the Missing Billion Initiative, an organization founded to transform health systems to be inclusive of the 1.3 billion people with disabilities globally. “Data is essential to provide greater clarity and move to action.”

In September, MHI joined Missing Billion and other partners the Clinton Health Access Initiative (CHAI), the International Disability Alliance, and the London School of Hygiene & Tropical Medicine in a Commitment to Action announced with Chelsea Clinton at Clinton Global Initiative. It is aimed at reducing the 10- to 20-year life expectancy gap people with disabilities face compared to people without disabilities by transforming health systems.

“As part of the McKinsey Health Institute’s work to add years to life and life to years, we invest significantly in important work to reduce health inequities, including addressing global gaps in care for people living with disabilities,” says Erica Coe, who co-leads MHI.

Ahmed Osman, McKinsey associate partner, and partner Dr. Mona Hammami, both based in the United Arab Emirates are leads for MHI in the Middle East. They worked extensively on the report. Here, they discuss McKinsey’s unique role to play in driving change, the challenges of changing health systems, and more.

Why was this report on missing data on disability the starting point for MHI’s work?

Dr. Mona Hammami
Dr. Mona Hammami
Dr. Mona Hammami

Mona: Players in this space—governments, donors, private sector—all know disability inclusion is an important problem but haven’t prioritized it yet. It’s hard to do without clear evidence through data of how many people this is affecting in a given health system; while the definition of disability is missing, the way disability presents in systems is also missing. Players often can’t believe how big of a problem this really is, so we are shining a light on it.

Ahmed: We also need a baseline from which to measure our progress as the commitment progresses, which we can’t do without data.

What is MHI’s unique role in the coalition?

Ahmed: There’s a few ways we’re contributing. One is opening doors through our networks. For instance, in the UAE, we’ve been able to activate the regulator and public providers to deploy tools for systems-level change that we have jointly created with Missing Billion, and facility-level change that will impact patient journeys. These include improved data collection, and improved involvement and representation of people with disabilities. We were quickly on the ground in hospitals in Abu Dhabi, and we’re now working on scaling this effort across other countries.

Missing Billion Commitment partners
Missing billion commitment partners at Clinton Global Initiative.
Missing Billion Commitment partners

Mona: We’re also convening new players that we’re uniquely able to reach. This puts disability inclusion on the agenda in places where it’s been completely sidelined. We are helping crystallize the story and make it mainstream. This helps move from talking and awareness to funding, implementing, and impact.

What are some main challenges of changing health systems?

Ahmed: This is a problem around the world, in both wealthy countries and not. Most governments have not yet applied the lens of disability inclusion in their policy making, and there are many systems-level interventions that are agnostic of the type of impairment an individual has that need to be implemented. In many cases, we’re still at the basic level of even having a definition of disability.

We are helping crystallize the story and make it mainstream. This helps move from talking and awareness to funding, implementing, and impact.

Dr. Mona Hammami, McKinsey partner

While change has to start with governments, funders, NGOs and implementers, all have a role to play, and it will be different in every country. The private sector can also play a role here along with areas related to disability inclusion outside of health. There seems to be further interest from these private sector companies to come together and collaborate on the topic.

Some of these players came together on the sidelines of the Clinton Global Initiative for an action-oriented discussion about what's needed to help catalyze progress globally that McKinsey hosted.

How does this work fit into McKinsey’s broader commitment to sustainable, inclusive growth?

Mona: This is at the core of what we as a firm stand for, creating holistic impact for a completely marginalized group whose needs, due to existing data gaps, are unaccounted for in health, economic and social systems. People with disabilities are 16 percent of the global population. This issue needs to be center stage, and people living with disabilities must be part of every plan for care and growth. I’m proud that our firm is helping lead the way.

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