Among the many infrastructural deficiencies that were exposed during India’s deadly second wave of the COVID-19 pandemic, the inaccuracy in counting the number of the dead and the lack of data on the cause of death were particularly glaring. Enumeration of people who die and recording the cause of death are critical for understanding public health, according to epidemiologists. Unfortunately, because India does not use an efficient system and does not give enough importance to the registration of deaths, there is a massive gap in information on public health.
Demographers and researchers involved in mortality studies say that an accurate recording of deaths would have helped in addressing the problems associated with the death count during the pandemic. India has in place the Civil Registration System (CRS) and the Sample Registration System (SRS), which do a reasonably accurate job, say experts. However, the unique Million Death Study (MDS), which was started within the SRS in 2001, reveals how critical it is to register every death and record its cause.
The relevance of the MDS, particularly its robust system of data collection, is all the more apparent amid the ravages of the pandemic. Significantly, the MDS data, in spite of being consistently relevant, are not completely in the public domain and remain classified even to internationally recognised researchers. Snatches of data are available, but for some unfathomable reason, say the researchers involved, the programme was stopped in 2014. They believe that had it been continued, public health experts would have been able to guide the authorities better in dealing with the pandemic.
The MDS has shown that capturing and quantifying data on the cause of death can be done at low cost, with high quality, and in a timely manner, said a report titled “Nationwide Mortality Studies to Quantify Causes Of Death: Relevant Lessons From India’s Million Death Study” published by the MDS team in 2017. Further, the MDS has for the first time provided national, reasonably reliable age-specific and cause-specific death rates up to age 70 for India. The study’s results have substantially altered previous estimates of mortality and risk factors, says the report. Also read: India's death toll triple the official numbers
Frontline spoke to those who worked on the study to understand its importance during the pandemic and how it could be used to steer public health policy. The statistics on excess deaths in several States point to an alarming situation, say experts monitoring the pandemic’s numbers. “At this point, emphasis has to be placed on data collection,” says Prabhat Jha, an epidemiologist who initiated the MDS.
Why the dead matter
Jha says: “Why do dead people matter? It is to help those living. If you have information on the patterns of deaths and where they occur and the causes, you can do things that are relevant to the living. So, the issue in India, and a long-standing one, is this gap in knowledge. It has come to a head in the time of COVID as there is so little information available.” A prime reason for the lack of information is that about 70 per cent of the deaths take place in the rural belt, and 54 per cent of these deaths happen at home. This makes it difficult to record the cause of death as most often the family cremates or buries the body before the data on the death are collected. Out of the 10 million deaths occurring every year nationally, there is no certificate stating the cause of death for eight million, and three million are not even registered, says Jha.
He told Frontline that the most reliable information is from the Registrar General of India (RGI) with its ongoing sample registration, which surveys one per cent of the population. However, there is insufficient public and government attention to death data. For some reason politicians are nervous and keep such data concealed. Jha says that it is important to understand that the correct information about death rates is useful in not just accounting for deaths but in identifying the hotspots. Community transmission would be high in areas reporting lots of deaths. Such areas should be earmarked for aggressive testing and vaccination drives. Thus, death data are not only of interest to epidemiologists but also crucial to the nation’s handling of the pandemic.
Taking its name from the approximately one crore (10 million) deaths that occur annually in India, the MDS started in 2001 with a chosen 1.3 million nationally representative households in 7,000 locations. It began as a collaboration between the Centre for Global Health Research (CGHR) based in Toronto and the RGI. The MDS used a simple method called verbal autopsy. This involved about 900 non-medical field volunteers being trained and sent out to survey living family members or close associates of the dead. They conducted the “verbal autopsy”—a structured interview that included questions on the medical history of the deceased, the key symptoms and a local language narrative of the family’s version of symptoms and events leading to death. Additionally, each area would recruit a resident part-time enumerator, such as a local teacher, who would be enlisted to record births and deaths. The cause of death, however, would be noted by the trained volunteer.
Seven thousand urban and village blocks were identified for the survey. Volunteers interviewed 1,000 to 1,400 people in each block. Field volunteers monitored the events in these homes every six months for a decade. The data was then given to 400 identified physicians to independently give a diagnosis for the underlying cause of death using the World Health Organisation International Statistical Classification of Disease and Related Health Problems methodology. Two physicians were deputed to each case. This unique feature ensured the study’s results were thoroughly validated. Also read: The fiasco that is India's vaccine policy
The CGHR states in its website: The Million Death Study is one of the largest studies of premature mortality in the world. The MDS is an ongoing study that is conducted in India, where, like most low- and middle-income countries, the majority of deaths occur at home and without medical attention.
The CGHR, in collaboration with the RGI, monitored 14 million people in 2.4 million nationally representative households in India between 1998 and 2014. The programme was expected to continue until 2022. However, after 2014, the verbal autopsy method adopted by the MDS was stopped. The MDS falls within the Sample Registration System, which is under the purview of the RGI. Jha says the SRS is a true random sample of deaths in the country. However, it is the methodology and validating processes followed by the MDS that are essential in getting an accurate picture.
Key findings of the MDS
While specific statistical data are not put out in the public domain, the CGHR’s report has published key findings. The MDS showed sharp differences in the proportion of hospital and home deaths, even after adjustments for differences in education, age, and rural/urban residence. The study demonstrated that India has about one million deaths attributable to smoking each year, which is about three times the WHO’s earlier estimate. It showed, too, that India had about 1,00,000 premature HIV deaths in 2005, about a quarter of the total estimated by WHO models, but five times more malaria deaths than what the WHO had estimated. Analysts found that the WHO estimates were wrong because they were based on case-fatality rates in treated malaria patients, whereas untreated patients accounted for most malaria deaths.
According to the report, the MDS found areas of public health which had perhaps been inadvertently neglected but had an impact on mortality. For instance, the study developed conditional sex ratio methods to estimate that as many as 12 million female foetuses were aborted in India over the past three decades—half of them in the past decade alone. The report says: “This documentation of the expanding use of selective abortion has helped trigger public debates and strengthened the implementation of laws to reduce this practice.” The study also showed far more suicides among young adults than what the Government of India had estimated. In addition, most of the suicides were among young adults rather than older farmers, a group that had been regarded as accounting for the highest number of suicides.
In another significant finding, the study documented 50,000 snakebite deaths in 2005, which was the number the WHO had estimated for snakebite deaths globally. The WHO has subsequently revised its global snakebite death total to 1,00,000 for 2015 and added snakebites to its list of priority neglected tropical diseases.
Tables available in the public domain say 41.8 per cent, or two-thirds, of the total deaths in India occurred in the 30-69 age bracket during the first phase of the study (2001-2003). According to a demographer, this data would be about the same a decade later. Among the top three causes of death during the early study period, heart attacks were the most common at 12 per cent, followed by infectious diseases (11.1 per cent).
The RGI when contacted declined to comment on the MDS. However, a look at reports such as the Medical Certification on Causes of Death (MCCD), put out by the department in the public domain, indicates that the collection of death data is still on. Researchers clarify that the MCCD is only for hospital deaths and is not representative. Furthermore, it relies on medical certification and not verbal autopsy. Also read: Lessons from the 'first wave'
The 2019 (which is the latest) MCCD report states that India’s total death count was 75,96,849. The number of medically certified deaths was 15,71,540, about 20 per cent of total reported deaths. Usha Ram, a mortality studies professor at the International Institute of Population Sciences, says this percentage should improve in order to aid the understanding of the larger picture, which is crucial to formulating public health policy.
Usha Ram says: “The MDS is therefore very relevant as this is the only data source where we get good quality of information on the causes of death in India. Its main strength is that it is population representative, unlike hospital studies. It has a complete scientific base, which provides data on who is affected, where, what ages, etc.”
The ultimate goal of the MDS was to provide results for the leading causes of death in India, which would then be given to government research agencies for them to take action against preventable deaths. COVID has shown the shambolic state of the health system. When there are tools in place, it would be curious to know why they are not used.
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