The single-biggest challenge to India’s health policy is non-availability of regular and reliable data on health outcomes. Aadhaar will be invaluable here.
Right from its inception, Aadhaar has been the focus of much discussion and debate. Questions have been raised about its existence, scale, usefulness, privacy concerns, and, more recently, on whether government entitlements should be linked to it or not. However, there is an important aspect of its relationship with universal basic healthcare and well-being that has not attracted much attention.
Aadhaar’s vision is to empower individuals with a unique identity and a digital platform to authenticate anytime, anywhere. In doing so, it could be the stepping stone to building the civil registration and vital statistics system (CRVS) in India. From an individual perspective, civil registration (CR) records vital events such as birth and death; in some developed countries, it also records marriages, and external and internal migrations. Tracking these vital events is extremely important for the design of evidence-based public policy in a modern society.
However, without a unique identification like the Aadhaar, it will be practically impossible to design and implement the CRVS. In essence, the CRVS registers every birth and death, and issues birth and death certificates. It compiles and disseminates data on these vital statistics. Given that it also provides information on causes of death, the CRVS could play an important role in setting priorities and shaping health policy in India.
The single-biggest challenge to India’s health policy is non-availability of regular and reliable data on health outcomes, in particular on deaths. A lot can be learnt about the quality of life from death. In a large and diversified country like India, where health needs differ from state to state, and, within a state, from district to district, there is, unfortunately, no quantitative and disaggregated measure of health outcome that can be the basis of framing and assessing health policy. As a result, in spite of the best efforts of the government, there is little or no evidence whether health policies are having any intended effects. Perhaps due to lack of good data, there is no political pressure on elected representatives to address health issues at the local level. Another inconvenient truth is that lack of basic health data disproportionately affects the weaker and vulnerable sections of society – women and children.
Historically, the government attempted to address this issue with the civil registry system (CRS), which goes back almost 50 years, with the passage of the Registration of Birth and Death (RBD) Act in 1969, under which every birth and death was to be compulsorily registered. It was envisaged that CRS would be “…the unified process of continuous, permanent, compulsory and universal recording of the vital events (births, deaths, stillbirths)”. Though there has been considerable improvement in the civil registration scenario in the country since the passage of the RBD Act, it is far from complete, and there is significant variation across regions and socio-economic groups.
Closer scrutiny of the data reveals some of the shortcomings that require immediate attention. For example, the level of registration of deaths in states which are in dire need of good health policy, such as Bihar and Uttar Pradesh, was as low as 31.2 per cent and 44.2 per cent respectively in 2015. What makes this worrisome is that there is a stark gender and age bias in the registration of deaths. Fewer women and children’s deaths are recorded or registered. In Bihar, only 233 infant deaths were registered in 2015, of which 97 were female and 136 were male. If one uses the sample registration system data to estimate the number of infant deaths, then in Bihar, these were estimated to be 113,926, which is 489 times higher than what is registered. Similarly, in Uttar Pradesh, only 15,410 infant deaths were registered while estimated infant deaths were 265,089 – 17 times higher than what was registered.
Even in states such as Kerala and Tamil Nadu, which claim 100 per cent registration of deaths (estimated death using the sample registration system [SRS] is less than or equal to the registered deaths), there is a large bias in registration of infant deaths. For example, when infant deaths estimated from the SRS are compared with those that are registered, it turns out that only half the estimated infant deaths were registered. The estimated infant deaths in Kerala and Tamil Nadu were 6,313 and 19,972 respectively, of which only 3,050 and 10,743 respectively, were registered.
In light of this, it becomes imperative to develop an Aadhaar-based framework for registration of every birth, infant and maternal mortality. The reason for this is twofold.
First, it should be the priority of the state to ensure that infants and mothers do not die due to avoidable reasons/diseases. Registration of births, infant and maternal deaths will help us with the necessary real-time data to assess the health policies of the government at a local level. Second, though the government recognises that there is a glaring omission in the registration of infant deaths, particularly deaths at home in rural areas, there has been no concerted effort to correct this anomaly. Aadhaar can play an instrumental role in filling this gap. It could become the foundation for building the CRVS in India, which becomes a basis for policies on health and well-being of people.
The framework is based on the basic premise that every birth and infant and maternal death invariably requires health intervention and, therefore, registration is an important indicator of quality and quantity of healthcare. The framework takes advantage of the digital environment, in particular Aadhaar, to ensure that this data is captured on a real-time basis to inform policy.
1. Every pregnancy is classified into two categories: registered and non-registered. Data from the Ministry of Health and Family Welfare shows that across all states and districts, an increasing number of pregnancies are registered. Every pregnancy that is registered should be linked to the Aadhaar of the mother, and if it is not available, then the Unique Identification Authority of India (UIDAI) should be informed in order to enable generation and verification. However, one must exercise caution that healthcare services are not denied due to non-availability or non-verifiability of Aadhaar.
2. Every pregnancy (registered and non-registered) will be linked to an event (live birth, stillbirth, pregnancy-related death and abortion). Once the event is reported, then it has to be recorded with unique identifier/Aadhaar. In case of an unregistered pregnant woman seeking medical intervention at the time of outcome or beyond, for a limited period (say three months after outcome), the event should be recorded with unique identifier/Aadhaar in retrospect. The mechanism of generating Aadhaar should be readily available to the cases where it does not exist. This would require continuous and active collaboration between CRVS and UIDAI. In the case of children, the UIDAI authorities should take a more proactive approach and increase their coverage – as of today, data from UIDAI shows that of all the Aadhaar numbers issued so far, less than 5 per cent are for those under five years of age, which is a gross undercounting of children.
What is extremely important is that every pregnancy and event associated with every pregnancy is linked to Aadhaar. In the event of live births, an Aadhaar-based system will record the date and time of the event, place of event such as institution or home, and other vital statistics related to nutrition such as height, weight and immunisation record. In the event of stillbirths, maternal death and abortion, it would be possible to track the event date and time, the cause of death and, more importantly, the place of the event – whether it was institutional, with access to some healthcare, or at home. With Aadhaar, it will be possible to track the regional differences in access to basic healthcare services and also to track progress over time.
Without a CRVS, it is practically impossible to design smart health policies for a large and diversified country like India. Aadhaar could be a stepping stone to building the CRVS, which should be the top priority in the government’s health agenda in the coming decades. However, as we take advantage of digitisation and Aadhaar in building the CRVS, we must also develop a robust legal framework that prevents misuse of sensitive data so that an individual’s negative freedom is well protected.