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Emphasis on democratising, linking India's healthcare data to human rights standards

By Arjun Kumar* 

The census data has proven to be useful for not only administrative purposes but also for development research over the years, especially in the health sector. There has been an evolution in collecting health data in India over many years. The primary dependency was always on the census, however, the level of data or information it presented was limited.
In the 1990s, the series of National Family Health Surveys, which was an outgrowth of the World Fertility Rate surveys, has provided an enormous wealth of data that is also open for use by researchers.
The users of health data, who have multiple sources to reach out to, must ensure that the data is truly credible and the available information is closest to reality, for which there must be a proper judgment of the quality of the data. To further discuss the current challenges and issues related to health, the Generation Alpha Data Centre (Gen Alpha DC) at Impact and Policy Research Institute (IMPRI), New Delhi hosted a #WebPolicyTalk on the topic “The State of Demographic and Health Data in India” as part of the running series “The State of Statistics – #DataDiscourses”.
In her opening remarks, Prof Usha Ram, Department of Public Health & Mortality Studies, International Institute for Population Sciences (IIPS), Mumbai, noted that most of the Indian welfare programmes and policies have had only limited success as most of them were meeting the local needs. She said, she would only be covering information about population health coverage alone and not focusing on the supply aspect of the health data.
Using evidence-based planning allows us to quantify health indicators in a reliable manner. According to Prof Ram, Time Series estimation is a better method to categorize and analyze the data. However, periods such as the COVID-19 Pandemic require real-time data to be used. The requirement is to go micro and collect data from the district level and even lower categories of the state such as blocks and panchayats. The data must be collected based on socioeconomic characteristics.

The Census

The level of comprehensiveness of the data must be determined by questioning the type of indicators and how many of them are a minimum requirement. The selection of indicators may be based on measuring mortality or morbidity. The judgment of the quality of data must depend on multiple parameters such as representativeness, completeness, reporting accuracy, etc. 
The next challenge would be the accessibility of the data as most of the unit level information is not available to common researchers and even if they are it would be in a tabular summary format. There exists an inherent inequality in terms of access to quality resources. The data must also be able to track real-time trends and shifts on the ground.
The Census is the most detailed collection of data that happens every ten years in the country. It is useful for the analysis of multiple trends, however, it is unable to collect data on morbidity and mortality. The pro of using the census as a reference is the age-wise breakdown of information which can only be taken from a census as it is conducted at a large scale. 
The omission rates have increased over time and are currently at 2.3%. Urban areas have been observed to have higher omission rates and while looking at the trends in terms of gender the omission rate for rural women and urban men are the highest.
Prof Ram stated that “data release in the Indian Census has been delayed in the recent years”. She cited the lag between the release of the census and the release of the data to be longer, with the improvement of technology the release of such data must not be lagged.

Other important sources

The National Sample Survey Organisation (NSSO) conducts large-scale sample surveys in diverse fields through nationwide household surveys on various socio-economic subjects and themes. The NSSO has published health data, third party reported morbidity (selected), for five periods.
HMIS (Health Management Information System) is a web-based information system that collects data online at district and sub-district levels on rural health clinic (RHC) service delivery indicators. Using this data the National Health System Resource Centre conducts analysis and prepares state-wise indicators. However, it was noted by Prof Ram that the lack of socioeconomic variables in the data set makes it less valuable.
Another major source is the Sample Registration System (SRS) that was initiated in 1964-65. It is a large-scale demographic survey providing annual estimates of birth rate, death rate, and other fertility and mortality indicators at the national and sub-national level by place of residence and gender. This source covers 1.5 million households and close to 8.08 million people.
The National Family Health Survey (NFHS) is a multi-round survey conducted in a representative sample of households throughout India since the early 1990s. It collects data on health and family welfare policy and program purposes. It provides information on fertility, child and infant mortality, the practice of family planning, nutrition, etc.
There is also the District Level Household survey that gives coverage for antenatal care (ANC), immunization services, the extent of safe deliveries, contraceptive prevalence, and many more specific variables. There are other special surveys focused on specific population subgroups Longitudinal Adult Survey in India (LASI) and Study on Global Ageing and Adult Health.

Data gaps

There exist large gaps in the data collected about primary subgroups or important variables that are not being considered in the surveys. The information on cause-specific mortality or cause of death is very poor even at the national level. The situation is similar for the morbidity data also as it is extremely limited. 
The lack of a surveillance system at the community level causes the ignorance of hidden and residual disease burden. Even registration of deaths in states is very poor, as there are only six States with 100% death registration. The common researchers or interested individual entities find it hard to access unit-level data from the system is tough.
Prof Ram commented that “there is a need to strengthen official data system”. She suggested that this could be done by investing more in the Civil Registration System (CRS), HMIS and SRS. The administration must consider adopting a Monitoring and Evaluation System to monitor progress towards achieving Universal Health Coverage (UHC) and Sustainable Development Goals (SDG) goals.
Dr Rattan Chand, former chief director, Ministry of Health and Family Welfare, Government of India, agreed that there is room for change and evolution in the format of collecting and publishing health data in India. The only extensive level of survey done at a national level is by the NSSO which focuses on key factors like the morbidity profile and also the aggregate expenditure on health by multiple subgroups in the population.

Data inconsistency

Dr Chand also cited the ease of use or the user-friendliness of the data which has evolved in a better manner than how it started out. The inconsistency of data for the same period, theme, or variable is a major issue as multiple reports on the same topic provides different results.
Dr Manorama Bakshi, Head, Health and Advocacy, Consocia Advisory, New Delhi, commenting on on the issues of monitoring and evaluation, referring to her extensive experience of over 10 years on the field, said, some of the States have not progressed even after many years with their immunization levels, even with multiple programmes running successfully in other States.
On the point of achieving Universal Health Coverage (UHC) and SDG goals Dr Bakshi commented “every sixth human being belongs to India and it is very important for India to achieve the SDG target of SDG 3.” The need of the hour is “localization” to ensure that the process is decentralized and reaches the micro-levels of the state.
Dr Srinivas Goli, Assistant Professor, Centre for the Study of Regional Development, Jawaharlal Nehru University (JNU), New Delhi, stated that “we need to increase the faith in the Indian data systems” for enhancing the quality and trust factor of data collection and registration systems. The aspect that administrations or ministry-level systems must grant is access to unit-level information.
The local awareness about the mission or dive for data must be popularised over the country to ensure better lodging of data and information from the people. Dr Goli stated that the country must also assess the state of digital health in the country and shared his experience of working in Australia where digital health is a matter of great importance.
After listening to the remarks from the discussants, Prof Ram spoke about the points and concerns raised and further emphasized the fact that there is a larger movement of data becoming more democratized over the world and the necessity to link the data to human rights standards which could ensure further recording of essential information about an individual’s health.
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*Director, IMPRI. Inputs: Simi Mehta, Anshula Mehta, Ritika Gupta, Sunidhi Agarwal, Sakshi Sharda, Swati Solanki, Mahima Kapoor. Acknowledgment: Arjun Sujit Varma, Research Intern at IMPRI

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