The Data for Health initiative: Improving availability and quality of health data

Imagine if physicians did not have access to basic measurements like blood pressure, temperature, or blood tests. This lack of data would make it difficult for them to diagnose and treat illness. Just as these basic data are essential for physicians, data from civil registration and disease surveillance programs are vital for pinpointing the diseases and injuries that are cutting lives short and causing suffering around the world. These data can also guide policymakers toward solutions that make people healthier. Unfortunately, huge gaps in these crucial data sources present major challenges to evidence-based health policymaking.

That is why we at IHME welcome the Data for Health initiative, funded by Bloomberg Philanthropies, which aims to improve the availability of birth and death records and non-communicable disease surveillance data. The Union North America is coordinating the Data for Health project, and grantees include the University of Melbourne, the US Centers for Disease Control and Prevention, Johns Hopkins University, and the World Health Organization. This is the type of international collaboration that can produce profound results for population health.

As the coordinating center for the Global Burden of Disease (GBD) project, we at the Institute for Health Metrics and Evaluation (IHME) at the University of Washington are part of an international effort to measure early death and disability for more than 350 diseases, injuries, and risk factors. We have identified major data gaps that, if filled, would dramatically improve the science of global health measurement. So far, we have gathered 30,000 different sources of data, creating the world’s largest population health data repository.

Only about a quarter of the world’s deaths are recorded through civil registration. India alone represents 17.5% of the global population and has a sample registration scheme that captures only 0.5% of deaths. Improving death records in India and other countries would represent a major scientific advancement. Information about the prevalence of non-communicable diseases in sub-Saharan Africa is also severely lacking. One powerful illustration of these data gaps is the fact the GBD study was able to find data from only six African cancer registries. In contrast, GBD used data from 64 cancer registries in Italy alone.

Partnering with countries to improve the availability and quality of data is essential if we are to address the vast inequalities in the global health data landscape and provide policymakers with the insight they need to reduce premature death and suffering. Better health data would also help donors – who spend more than $30 billion each year on health in developing countries – to invest their money in the most pressing problems.

With the funding IHME has received from Bloomberg Philanthropies, we are already gaining knowledge about tobacco use and interventions that will help policymakers make people healthier. We are eager to see the results of the Data for Health project, as it would accelerate our efforts to monitor progress around the world on a range of health challenges. By improving civil registration and data on non-communicable diseases, the project will reveal new insights about the world’s health and illuminate interventions that are urgently needed.

- Christopher J.L. Murray, Director, Institute for Health Metrics and Evaluation at the University of Washington