How do we take the pulse of global health? It is impossible to perform a physical on everyone in the world, and once you did the data would be out of date. Yet, we have access to data on various health conditions, which often provide information such as the number of people affected by disease X in location Y in year Z. Throughout the world various organizations collect health data from various populations. Leaders in this data collection include the World Health Organization (WHO), various branches of the United Nations (UN), non-profit organizations, and national governments.
Rather than perform the tedious task of taking a physical for entire populations, these organizations make estimates, based on various sources of raw data. This data is largely collected in a disease specific manner. For example, UNAIDS is a UN entity that enacts interventions against HIV/AIDS. The programs UNAIDS funds also collect data on their success rate, which often includes information about the health of a population before and after interventions. Workers on location feed raw heath data allowing UNAIDS to provide statistics that compare the prevalence of AIDS among children (0-14 years of age), between years and geographic regions. Non-profits, like the Global Fund, perform similar evaluations of their work and often release publications showing the change in disease prevalence over time.
Since large international organizations are responsible for enacting policy and allocating funds accordingly to the neediest nations, they also collect data to evaluate the overall health of a nation. The WHO has around 190 member countries from whom they may receive estimates on the mortality rates, disease prevalence, or health indicators like how many children are under weight. Sometimes estimates are also made in place of those numbers reported by the country governments. The United States Agency for International Development, actually conducts its own survey called the Demographic Health Survey Program (DHS program), which surveys 5,000 to 30,000 households in each participating country every five years. The survey is specific to each region, but can include questions on issues from Malaria, to nutrition, and family planning.
Beginning in 1993 when its results were published in the World Development Report, the Global Burden of Disease (GBD) study developed a new measurement of health called the DALY (Disability Adjusted Life Years). A DALY is a measure of a persons’ health depending on one’s age at death (compared to life expectancy) and level of health during life. Using data collected from the various sources already mentioned, GBD used statistical analyses to compile and cross-check these various sources of raw data. The advantage of the DALY measurement is its comprehensive nature. It offers a standard of health comparison between countries, but also between diseases. Unlike many other data sources, non-fatal disabilities received attention, and were shown by the study to impact many people. In Epic Measures, Jeremy Smith explains the value of this study. Specifically, as I learned in conversation with Kate Lofgren, who worked on the study, GBD pushed the global health world to make adjustments to their own data accuracy.
Furthermore, it incited the use of data-driven policy tools such as GBD Compare, a powerful tool to used to visually communicate the data to policy makers. As Kate explained, these visuals/policy tools pushed other data sources to enhance communication. In the same year GBD Compare was released, AIDSinfo was created by UNAIDS (to provide visual representation of data).
In many ways the Global Burden of Disease study, didn’t change how global health data is collected, but rather how it was evaluated. This study’s power stems from what it offers as a tool of comparison between countries and diseases on a global scale. Since it incorporates various datasets it theoretically offers increased accuracy. That being said the GBD study did little to change how data was collected on the ground. Though the later 2000 World Health Report did more to understand health care systems and thus bring more voices into the data, I am personally more interested in where the data comes form in the first place. Further, I am interested in how that data collection could improve the DALY measurement. Currently the severity of the disabling conditions someone has during their life, are measured on a standard 0 to 1 scale, with values determined by physicians and global health officials. I think this measurement could be improved by utilizing survey-based measurements from people living with these disabilities, who could speak more to the challenges it poses. This gives room for bottom up policy recommendations, and leaves room also for adjustment by cultural interpretation of disease.
Ultimately these measurements of global health are intended to influence policy. However, if Epic Measures teaches us any lessons, it is that the global health world is far more driven by money than data. In the end, if the numbers are too harmful to political figures they may not be published. Comparing the depiction of WHO in Epic Measures to Jeremy Youde’s description in Global Health Governance, reveals the motor driving the WHO—bureaucracy. The entire chapter dedicated to the WHO in Youde’s book outlines how the organization is directed by the World Health Assembly (a compilation of member state representatives that meet yearly to vote on goals for the WHO) and funded largely (as of 2008) by Extra Budgetary Funds that are earmarked for specific issues as decided by the donors. Thus, the policy decisions are less driven by the data the WHO has than it is geared by what donors and specific country representatives find important.