Improving Data & Public Policy: Why better data on acquired disability matters

G3ict’s Global Policy Center is exploring a new global effort on the use of data and technology to anticipate and respond to disabilities acquired through natural and man-made disasters. This series of blog posts provides context for the scale of this problem and outlines a possible four-part response, including community building, applied research, data science, and stakeholder support.

The size and diversity of the global disability community is ever expanding. One significant cause for this expansion is the rate of disabilities acquired through man-made and natural disasters. By this, we mean the broad range of physical and psychological disabilities that result when communities are overwhelmed by violent conflict, mass displacements, pandemics, and natural hazards like earthquakes, hurricanes, and tsunamis.

Unfortunately, the global scale of this issue is not well understood. This is due in part to the lack of contemporary research on the correlation between disasters and acquired disabilities and siloed approaches to estimating the impact of such disasters. As a result, governments, NGOs, and multilateral organizations do not have resources to inform their planning or responses. This creates tangible economic and social consequences that we will explore in this series of blog posts.

We do have some basis for estimating the potential scale of this issue from past research. Out of the 1 billion persons with disabilities worldwide, it is believed that 80% acquire their disabilities between the ages of 18-64. The United Nations estimates that for every person who dies as a direct result of violent conflict, another three people acquire a long-term disability. A 2008 report by the Geneva Declaration also suggests that 3 to 15 times more people die from the indirect effects of violent conflict than direct casualties. While such correlations do not currently exist for natural disasters, they can be found through modern data science. Such technology would also be critical to validating or replacing older assumptions about the impacts of violent conflict.

Let’s put this in context of current events. To date, the number of known casualties from the conflict in Ukraine is over 12,700. A decade of violence in Syria has resulted in 308,000 civilian deaths. Applying a 1:3 ratio of casualties to long-term acquired disabilities, it is possible that over 950,000 people joined the disability community in the past 10 years due to these disasters alone. This does not come close to accounting for the millions of people that are displaced abroad or within their own borders, and the impacts they experience due to psychological trauma, food insecurity, and lack of access to healthcare.

Now consider the diverse range of man-made and natural disasters that occur in a given year. In 2021, there were 432 recorded disasters that killed nearly 10,500 people and impacted 100 million others. These include floods in India, Nepal, and Germany, a super typhoon in Indonesia, and a cyclone in the Philippines. The largest event was an earthquake in Haiti that killed over 2,200 people and injured thousands more. The United States also had its deadliest year for natural disasters in a decade with 20 events, such as Hurricane Ida, accounting for 688 fatalities and $145B in damage. A 2022 report from the US Government Accountability Office estimates that up to 23 million people have debilitating effects of long-Covid just in the United States. Additionally, a recent report by the Intergovernmental Panel on Climate Change states over 3 billion people worldwide are highly vulnerable to the effects of climate change. These are just a few examples of the siloed streams of information that must be woven together to fully understand the magnitude of this problem.

Left unrecognized and unaddressed, there a very real social and economic consequences to the near constant expansion of the disability community due to man-made and natural disasters. Specifically, we believe there is a clear connection between this issue and the degree to which persons with disabilities continue to be underrepresented in global population data. Absent a method to anticipate and then validate the rate of disabilities acquired due to disasters, we should assume that affected individuals are essentially invisible in statistics used to make policy decisions. If true, this undermines the intended benefits of public policy and other interventions. This is a point recently underscored by Ioana Tanase of Microsoft and Denice Ross, chief data scientist in the White House Office of Science and Technology Policy. We will elaborate on this point and potential humanitarian, geopolitical, and long-term societal implications in this blog series.

Given the importance and scale of this issue, G3ict’s Global Policy Center believes there is an urgent need to increase global understanding on this subject. Greater awareness should then lead to purposeful action to address acquired disabilities resulting from man-made and natural disasters. We believe there is both a compelling need and real opportunity for a four-part approach that includes:

1. Community building – Through a series of convenings with experts representing major stakeholder groups. The discussions will build from the important work of the European Disability Forum, United Nations, World Bank, and US Institute of Peace, among others. The goal is to create an agenda for action supported by international collaboration.

2. Applied research – Through a feasibility study, subject matter experts from this new community of practice will identify the essential data sources needed to create a model for predicting the rate of disabilities acquired through a range of disasters.

3. Data science – Together, this community will design a machine learning-enabled resource to predict the risk of acquired disabilities and related social and economic impacts resulting from disaster scenarios. This will become a primary resource for governments, NGOs, and multilateral organizations as they develop policies and allocate resources to respond to future humanitarian crises.

4. Stakeholder support – This work will result in predictive analytics tools, risk indexing reports, model policies, and an active network of global experts. This will create a structure of ongoing support that will enable stakeholders to ensure all citizens have full access to their rights and mitigate the consequences of acquired disabilities and disasters to the greatest extent possible.

This series of blog posts will explore this approach in greater detail. G3ict welcomes engagement with all interested parties. Please contact Shane Kanady at [email protected] to join our community.