India will soon have state-specific data on diseases and how these are affecting the local people.  This information will be an important tool with the health ministries to frame health policies and restructure health systems.

An initiative by the country’s apex science research body Indian Council of Medical Research (ICMR), a public-private think tank Public Health Foundation of India (PHFI) and the health ministry, along with the Institute for Health Metrics and Evaluation (IHME) at the University of Washington, USA, will release the first set of data estimates for India by 2016.

Indian state-level data will be part of larger Global Burden of Disease (GBD) study that has been ongoing since 1990 and was updated in 2010 and 2013 by IHME. The GBD attempts to quantify health loss from diseases, injuries and other risk factors across age groups, sexes, countries, regions and time.

The data in India is being collected by over 100 collaborators under 10 expert groups, specially  formed for the study, informed Lalit Dandona, research professor at PHFI who is also heading the GBD India findings. “These expert groups will advise on what data is needed, how it should be interpreted and how policy can be influenced,” he said.

The health experts feel that this is a first step in the direction of bringing strong evidence for better delivery of benefits and health policy changes. “From national level data we are moving to state-level data. There are strong regional variations within districts also,” said J V R Prasada Rao, former health secretary, stressing that from state level data efforts will then be directed to collect district-level data.

Since health is a state subject in India, the data collected through the GBD project will be useful for decentralized planning. “To get a well grounded policy, we must get as close to the ground as possible,” said Dr. K Srinath Reddy, president, PHFI. He added that to make full use of the data collected through studies like the GBD, strong health systems that are capable of handling such data for the regular functioning of national health systems are needed.

Data for China, Mexico and the UK was collected earlier where it is being used effectively. Data in India, Brazil, Japan and the USA will be collected this year. GBD 2013 provided estimates for 323 diseases and injuries and 67 risk factors for 188 countries.

The findings of the GBD will be releases in series of scientific paper along with policy briefs, workshops and seminars. 

Hopeful that the GBD will bring effective policy impact, director general of ICMR Dr. Soumya Swaminathan said, “As scientists and researchers we tend to stop at publishing papers in biomedical journals and that often doesn’t lead to any policy impact. [With GBD data] Besides the disease estimates for decentralized planning, we will be able to identify which are the areas that have gaps. This will take evidence to policy.”

Meanwhile, there is some concern over how the data will be interpreted. For a robust policy, simply numbers are not enough, said Professor Ritupriya from Centre for Social Medicine and Community Health at Jawaharlal Nehru University. “For instance, if diarrhea is coming down in some parts of India, I would like to know the reason behind it. Is it because of a health behavior change?” she said.

Cautioning that the GBD gives only one aspect of the disease and should not interpreted in isolation, Dr. Vinod Paul, head of pediatrics department of All India Institute of Medical Sciences said, “Some diseases will fall off the table as data doesn’t show analysis. There are other frames through which data should be looked at. We have to be careful not to be carried away.”

The partners for the project, however, understand the limitations of data gaps that exist and are hopeful that in years the quality of data estimates and how these are interpreted will improve. “We do not expect the data to be perfect in this first attempt. But we believe with every attempt the robustness of the data will improve,” said Dandona.

“This initiative of reaching out to the states to get better estimates is a part of a process, not an end of the process,” said Dr. Reddy.

The GBD project is funded by Bill and Melinda Gates Foundation and World Bank.