As 40% of deaths occur at home, India must use verbal autopsy to collect data on causes of death

data-collectionBy Nandita Saikia and Purushottam M Kulkarni*

By setting the eight Millennium Development Goals (MDGs) in the early 2000s, the United Nations galvanised unprecedented efforts to eradicate extreme poverty and hunger, achieve universal primary education, promote gender equality and empower women, reduce child mortality, improve maternal health, combat HIV/AIDS, malaria and other diseases, ensure environmental sustainability, and promote global partnership for development. In September 2015 the international community, led by the UN, declared a set of 17 Sustainable Development Goals (SDGs) related to economic development, environmental sustainability, and social inclusion, and to be achieved by 2030.

What of India’s health-related MDGs—were they achieved? It is found that India successfully achieved the MDG 6 of halting and reversing the HIV epidemic.  However, the country failed in the MDGs related to child and maternal health.

  • First, though India is close to attaining the goal set for the under-five mortality rate, it has missed the targets for infant mortality (39 per 1000 births in 2014 vs. targeted 27 for 2015) and maternal mortality (167 for 2011-13 vs. target of 109 in 2015). India is also reported as moderately off-track for the reversal of the incidence of malaria and other major diseases.
  • Secondly, the national achievement in many of the indicators masks the poor performance of many populous districts from north-central and eastern India which have been lagging behind.
  • Finally, although the level of mortality has reduced substantially in the MDG period, the absolute numbers of maternal and child deaths are massive.

Therefore, it is important for India to gear up for SDGs with well-thought out and systematic efforts especially at the local level. It is noteworthy that the SDGs are not only target-oriented but also inclusive, unlike the MDGs which emphasised on the overall attainment of goals. The battlecry for the SDGs—“No one is to be left behind”—means that for India, the overarching goal is to reduce inequalities across gender, region, class, and caste. An immediate imperative is an assessment of data availability for the precise estimation of health and nutrition metrics, at small geographical areas and for any disadvantaged socio-economic groups.

The UN has decreed that SDG indicators should be disaggregated, wherever relevant, by income, sex, age, race, ethnicity, migratory status, disability status, and geographic location, or other characteristics (General Assembly resolution 68/261). Thus India needs to monitor all of these indicators by gender, geographical regions (districts or below districts, say, parliamentary constituencies), income groups, religions, castes, and disability condition. Moreover, these are to be obtained at a series of time points or for periods between 2015 and 2030, to facilitate continuous monitoring of the country’s progress.

Having reliable statistics on the causes of death in India is still a faraway dream. The two major systems of data on causes of death–i.e., Survey of Causes of Death (SCD-Rural) and Medical Certification on Causes of Death (MCCD)—are unable to provide cause-specific death rates due to their unscientific sampling design, poor coverage, non-availability of the size of exposed population, and irregularities in publishing reports. The most recent ‘Special Survey of Deaths’, for example, conducted under the Sample Registration System (SRS) by the Office of Registrar General India, appears to be an improvement over the earlier data on causes of death; however, individual-level data is still not available, making it impossible for researchers to evaluate the nuances of cause-specific death rates across the country.

Data availability is much worse for cause-specific death rates. There is no published report giving cause-specific death rates in India. The published reports on causes on deaths provide only the distribution of deaths by causes. Since these reports do not provide detailed information on the number of persons exposed and events by age, sex and causes of death, it is not possible for researchers to calculate SDG indicators related to cause-specific deaths. Besides, the age groups for which distributions are published are broad and for a large proportion of deaths, the cause of death is not known. Further, there is hardly any available data on mortality attributable to pollution and poor sanitation and hygiene.

Some of the mortality indicators are available from surveys and sample registration at the state level, but estimates at lower geographic levels suffer due to large relative sampling errors. Complete coverage of deaths under civil registration would have enabled computation of indicators at district and even lower levels. Besides, indicators for socioeconomic groups are either not available at the district level or can be obtained only for large groups; for smaller groups, sampling errors become too large to detect differentials.

The same holds true for indicators of reproductive health. Morbidity indicators obtained from surveys are normally based on lay reporting, bringing their validity into question. Inability to achieve completeness of reporting of diagnosed morbidity has been a major handicap. The existing notification systems are not well-equipped to ensure reporting by the private sector—which happens to play a major role in curative treatment.  Healthcare utilisation indicators are available from surveys but lack of regular intervals of the surveys has been a hindrance for the continuous tracking of SDGs.

Indicators on nutritional status of children have been well captured in various surveys but again, at lower than state geographic level and for socioeconomic groups, sampling errors are large.  The Census does give detailed information on WASH indicators but there is expected to be only one more Census (in 2021) before 2030 if the decennial system is followed and the indicators derived from surveys face the deficiencies noted earlier.  Given these shortcomings of the existing data systems to yield trackable SDG indicators, it is essential to find ways to improve the existing systems not only by fine-tuning and expanding these but also to introduce innovations. The following sections discuss four strategies to improve the population and health statistics in India.

Since only 40 percent of the deaths in India occur at home, appropriate low-cost technology driven methodology needs to be used for assigning causes of death through verbal autopsy method. With incredibly faster mobile penetration and the government’s mission on ‘Digital India’, one possible solution may be to develop smartphone applications on registration of vital events.

In order to track the morbidity, nutrition, and healthcare indicators in India, it is important to conduct multi-purpose surveys at regular intervals. For this purpose, strong and long-term commitment from stakeholders, particularly from government and other funding agencies, is essential.

High-quality, open, and transparent data are essential for creating a democratic, accountable system and for measuring success.  Collecting accurate health and nutrition statistics at small geographical areas or for small population sub-groups is essential to improve the people’s overall health and well-being. Given the inability of the existing systems to provide complete enumeration of vital events and morbidity incidents,

India introduced several sets of surveys to meet immediate requirements of planning and programmes. These surveys have the limitation of small sample (and consequently large sampling error) or lack of coverage of specific items. Therefore, surveys cannot give mortality indicators at district level or for all age groups. Further, there is huge diversity within districts by class, caste, geography and religion.  Thus for a big and diverse country like India, a complete coverage is the only long-term sustainable solution.

Various systems in India do collect a huge amount of data on health and though there are inadequacies as pointed out above, it must also be recognised that the data are not being fully utilised. A limitation is that much of the data are not in the public domain and the users can only access the indicators provided in the published reports; surveys such as the NFHS, the DLHS, the NSS and the IHDS are notable exceptions. If the SRS data could be made available to researchers, taking care to protect the identity of respondents, it will be possible to obtain a number of indicators at low geographic levels and for socioeconomic groups. Of course, the users must be aware of sampling errors and use the indicators with caution. Similarly, the data on causes of death could also be released in the public domain in a similar manner so that users can make the best of the available information.

Tracking the SDGs is a vital need and undoubtedly an onerous task. The present systems of data are clearly inadequate to provide India with the indicators required at the levels needed.  No quick-fix solutions exist; rather, concerted efforts in various directions are required, if India’s statistical systems are to help the country track its progress towards achieving its development goals.

*Excerpts from the Observer Research Foundation (ORF) paper “An assessment of India’s readiness for tracking SDG targets on Health and Nutrition”.  Download full paper HERE

About authors: Purushottam M Kulkarni is a demographer based in Bengaluru. He has been a consultant to the United Nations Population Fund (UNFPA). Dr Nandita Saikia is Assistant Professor of Population Studies at the Centre for Study of Regional Development, Jawaharlal Nehru University, New Delhi

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