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Why Health Data Matters: A User’s Perspective

This blog post originally appeared on HealthData.gov on March 11, 2015. You can access the original article here.

Inveterate innovator Benjamin Franklin once quipped, “An investment in knowledge always pays the best interest.”

That adage holds true today—without doing the work to learn about the world, there is little we can do to change it. The need for actionable data is important enough to be enshrined in our Constitution, within the provision that established the United States Census. Unlike censuses in other countries, which were meant to tax or conscript, the United States Census was the first one designed to empower—it was the basis of representation in Congress and ultimately government spending.

Publicly available data are tremendously valuable and empowering. To give an example close to home, without these data, my organization, Measure of America – a project of the Social Science Research Council – would not have the raw materials necessary for our calculations of life expectancy at birth, youth disconnection, and many other vital measures of the lives of ordinary Americans. These calculations, in turn, provided the public health workforce with important statistics to inform their work. We learned, for example, that California’s Latinos, on average, outlive whites in the state by 3.6 years. Or that in the Baltimore metro area, Asian Americans outlive African Americans in the same city by an average of 17 years (90.5 years vs. 73.4 years).

The hallmark of our work, and product of openly available data, is a measure of well-being and access to opportunity in American communities called the American Human Development Index. It is based on the time-tested index used by the United Nations each year to measure development in every country. This index connects three basic areas of life—health, education, and standard of living—on one scale, allowing well-being comparisons between places and groups.

For health, our American Human Development Index requires life expectancy at birth, a basic summary measure of survival. Using mortality and population data from an agreement with the National Center for Health Statistics of  the Centers for Disease Control and Prevention, we have calculated life expectancy at birth for every U.S. state, congressional district, major metro area, and for the major racial and ethnic groups in each of these geographies. These data have been cited in The Lancet, The American Journal of Public Health and over forty other journal articles as well as twenty-six books since we began in 2008. They are the benchmark used by the Organization for Economic Cooperation and Development for international comparisons and have been used by state and local health departments across the country. Illinois has used it to study their aging population, New Orleans to map domestic violence, amongst many others. In short, there is tremendous demand for these data as a basis for research, policy, advocacy, and local actions to build healthier communities. And without the costly investment of public agencies in this data collection, these next steps would not be possible.

Our jobs, and those of many other researchers (from hedge fund analysts and geologists to historians and cancer geneticists), are dependent on the government to collect and make data available that no other organization has the capacity to produce. Without it, we would know much less about the world we live in—and what we can do to improve it.