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Story Publication logo October 25, 2013

The Problem with Data Collection in India

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Reasons and Effects of the Increase of Non-communicable Diseases (NCD’s) in India
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Non-communicable diseases cause 63 percent of deaths worldwide. In India, diabetes, heart attacks...

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Interview at the Indian Council of Medical Research, NCD Department. Image by Martina Merten. India, 2013.

Whenever I go to another country to research international healthcare systems, the first thing I try to collect is data — valid data on the healthcare system. Of course, when trying to prepare in advance you often start collecting data prior to your arrival — reading WHO studies or searching the web to find data from the local Ministry of Health, or from other international organizations and NGOs. Sometimes you are surprised by how much you are able to find.

This was the case with India and the spread of chronic diseases in the country: Non-communicable diseases (NCDs) cause two-thirds of the country's Burden of Disease (BoD), according to the latest country report from the WHO. These NCDs were responsible for 53 percent of all Indian deaths in 2010. Only 38 percent died because of infectious diseases. To be even more precise, 50.8 million people are affected by diabetes alone. That is an amazing 17 percent of the world's total. Furthermore, I had read that the number of chronic diseases in the Indian countryside is rising tremendously. Even the poor suffer from high blood pressure, coronary heart diseases, cancer and diabetes.

So, having read these numbers, I started my interviews with the assumption that I could first focus on collecting data and analyzing the results in Delhi and then try to find the answer to the question of why there is also such a rise in India's rural areas. Well, being a journalist, especially working in developing countries, you are not surprised if things work out completely differently from what you were expecting.

During my first three days in Delhi I got the impression that nobody really knows anything concrete about data on NCDs. Although the government, WHO, NGOs and specialists were able to repeat the data I had read before, I could tell that data collection has become a major issue in India. While talking to the Indian Council of Medical Research and the Council's own division of NCDs, I was told that "doing research is a big challenge." Why? There are no cohort studies; community-based studies are really difficult; and until 2007 there hadn't even been a department for health research in India. What they are doing, said Dr. DK Shukla, the head of the NCD division, is "interventional research" rather than "prevalence or incidence research." This statement was confirmed by the WHO office in India. "We have a framework," said Dr. Francois Decaillet, "but the data is not there."

At least I was given some ideas by the Center for Chronic Disease Control, an NGO that is doing lots of research and capacity building in the area of diabetes and cardiovascular diseases. And I was told that one focus of their work is on the support of operational research – basically trying to help collect data and at least a first step into the right direction. Finally, I learned from a doctor working at N-Doc — National Diabetes, Obesity & Cholesterol Foundation – that the numbers they have on how many people are suffering from diabetes in the cities and in the countryside are "estimations."

Well, so much for my research on numbers in the city. I would soon learn that asking about data for the countryside is asking for the impossible. During one of my first interviews in Uttar Pradesh, still in an urban setting, I was told by several doctors that there is no prevalence of NCDs in rural areas. Only three or four interviews later did somebody admit that, yes, diabetes and hypertension have increased over the last years in rural settings.

In a village named Museypur where only 900 Indians live I was told by one of the doctors who come by occasionally that they "haven't been collecting any data their entire life." If nobody collects data in the villages, how is it that the WHO is able to give all those numbers on the situation in rural and urban settings? Another doctor working in a small health clinic in nearby Safdarjung city told me later that he had recorded some data but that nobody from the next higher level ever came to collect this data.

Bottom line is that there is not yet sufficient data on how many people are suffering from NCDs in urban and rural settings. At least, I was able to learn that much.

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