CR: Let’s start with the census. The census does have information on under 5-year-old child survival. There is a series of questions on birth history, from women from 15 to 49 years, asking about how many children were ever born and how many of them are still surviving. To that information, they apply a series of equations, which are known as the Brass methods by which they can calculate the risk of dying between birth and five years. I am not aware of whether the census includes a specific question on maternal mortality or all-cause mortality. I don’t think so, because I haven’t seen a published report on that, but one needs to check.  In some other Asian countries, in the census, they also ask a question about whether there has been a household death in the last year or three years and they use that data to estimate mortality, but in the Indian census, they don’t. Census-based child survival estimates have several disadvantages- related to low periodicity, recall bias especially with regard to still births, and issues on statistical methodology. So, although this data is available in the census, this has not been taken seriously, and even now other sources have better information.

The NSSO health rounds are also not reliable for mortality data. There is a recall bias, and the sample size is not adequate for measuring adult mortality rates, or life expectancy at birth and anything related to the causes of death.

Even the Sample Registration System (SRS) and the NFHS themselves are hopelessly inadequate in terms of sample size, to be able to estimate an adult mortality rate with any degree of precision, which can be put to use for either assessing cross-sectional scenario at a point in time or to measure trends over time.   The confidence intervals are so wide that they will always overlap, and you’ll never be able to interpret differentials. I have the data published on this for SRS¹, which has a sample size several times higher than the NFHS. So, if the confidence interval is wide for the SRS, it will be even wider for the NFHS

TS: So let us come back to Civil Registration System (CRS) which is where we will focus the rest of our discussion. In CRS, the basic data is from form 2 which is a death report filed by a non-medical notifier.  If the death is attended by a medical officer they will fill form 4, which is the MCCD form, and if the death is elsewhere or brought dead in an ambulance to a doctor, then Form 4a is filled. Am I correct? Can you fine-tune me on this?

CR: All deaths are to be reported using a form 2. Whether the death happened at home or in a hospital or anywhere, it is to be reported using form 2.  There is a list of notifiers and registrars for local level on who can fill in the form and to whom they must submit it to at district and sub-district level and state level that is issued by the registrar-general of births and deaths. On form 2, the notifier also records the names of the informant from the household and they are supposed to get the signature or thumbprint of the informant because in official terms this data is being reported by the household to the government. [Of the total 36 states and UTs, in about 20 states/UTs it is the panchayats or general administration which notifies and registers in local and the district level. In about 15 states/UTs it is the health department which does so at the local level and in about 10 of these it also has the registrar-function at the district level as well.  Before independence and for many years after, in most states it was the police department which was the registrar, with the village kotwal playing the notifier. Now that arrangement exists in only J &K. In all other states it is the panchayat system and general administration or the health system which is in charge. Earlier, as inherited from the colonial state, registration was a citizen duty and the state bestowed it or denied it as part of the exercise of its powers. Now registration is increasingly perceived as an entitlement- which is a welcome development].

Deaths which have been in a health facility or hospital, are to be issued both form 2 and form 4 by the hospital.  So, when they are filling in the form 2, they get the signature of the person who is taking the body and they give him one copy. They also send one copy of form 2 and one of form 4 which is the Medical Certification of Cause of Death (MCCD) to the Registrar’s office directly.

The third type of deaths are those that were ‘brought dead’ to a physician or which happened outside the health facility, but which was attended to by a physician and for these he/she issues the form 4a. The family is then required to go to the Registrar and report the death, where they will fill in a form 2. And this form 4a is not given to the family. It comes directly to the Registrar’s Department and sent to the Health Department for further processing of all MCCDs.

I’m not really sure about the extent to which form 4 and 4a is implemented across the country. There may be some data from the Registrar General’s report.  I know, that in Tamil Nadu about 30% of deaths are reported with a form 4 and 13% across the state are reported with a form 4a, so an so the total MCCD coverage is 44%, which is quite good. Situation is similar in Goa, Maharashtra, Kerala- but these are high compared to other states. I also know that in Maharashtra and Goa (a much smaller state), the coverage of MCCD is quite high compared to other states, but across the country, there is a lot of shortfall in the availability of this information.

TS: But should we not be able to address this gap. We note that the SRS itself is a way of going deeper and putting another layer of verbal autopsy inquiry over the presumptive cause of death reporting and thereby improving the counting of births and deaths. There have been very good pilots run by people like Yogesh Jain, in JSS where they have used interactive voice recording with notifiers to also get a better quality of death reporting. We know that standardizing symptomatic, presumptive reporting is possible and this would add great value to CRS reporting on deaths. There is a WHO standardisation of around 128 diagnoses or even less that was suggested for verbal autopsy backed presumptive diagnosis of cause of death. Even the HMIS under NRHM had way back standardized about 12 diagnosis entities on which till today HMIS reports deaths. These categories are broad like fever related deaths, trauma related deaths, cardiovascular related deaths etc which  in combination with age, sex and geography is enough for quite a lot of district and sub-state health planning and actions. . Even if causes are relatively unknown, one can unpack it with information from surveillance sites. The other way to do it is to, like for IMR, use information from research studies to  look at the nature of deaths in a specific age group and then apply it to the other figures elsewhere.

So why aren’t we able to make these presumptive causes talk more? By standardizing protocols and giving training we should be able to achieve this almost immediately.  I believe the CBHI and the mainstream departments are focused on Form 4 and MCCD, which have inherent limitations even if we get it correct. On the other hand,  information from form 2 is reaching universal coverage and is digitized. Just a little bit more is required.

CR: I completely agree we could do get an adequate quality of mortality report with CRS data if we do this. There have been, to my mind two barriers to doing so: neglect and disconnect. Neglect because nobody paid attention to try and strengthen this cause of death reporting in form 2 through any kind of standardization. But what I want you to focus now is on the disconnect, in that research projects in this area are few and have never really translated into proper action which is integrated with the regular death reporting program under the CRS.  Because there has to a proof of that concept on scale, and only then can it be considered to be scaled up and strengthened across all state populations. We can get reliable data with numerators based on defined denominators even now, but the reasons we have not done so can be attributed to neglect and the disconnect.

CR: So as opposed to neglect, the TN government has been paying attention. And as opposed to disconnect, an implementation research project is underway, which connects research on data quality improvement with the routine operations of the CRS system. The project us led by the Director of Public Health, with technical support from the WHO. I am aware that field work is being undertaken in two districts Karur and Krishnagiri to record causes for all the deaths in these districts. The district population is the denominator. MCCD forms (form 4) are assured for all the deaths in facilities, and form 4A for deaths which happen at home and certified by a physician.  And for the rest of the home deaths which is around 55 %, the WHO verbal autopsy questionnaire is being used to investigate the causes of death. A detailed presentation of the project aims, design, methodology and progress till April 2024 was delivered to the Verbal Autopsy Reference Group Community of Practice, on 25^th April 2024.

The field methods for home deaths are quite straightforward. The health inspectors who are positioned in each PHC get the list of deaths for which there is no form 4. They get that list from the local registrar. The have been trained in conducting VA interviews. The health inspector goes to the identified household with a tablet and does the verbal autopsy interview and this gets uploaded to the server. As of now, much progress has been made for deaths in 2023, And recently, training was provided to a team of doctors to review these questionnaires and assign the cause of death based on the information from the questionnaire. The training team includes staff from the Madras Medical College, Nation Institute of Epidemiology and myself. Academics from medical colleges in Krishnagiri and Karur are also involved in the project to help build local capacity, support field supervision, guide local monitoring & evaluation, and other technical support. The cause of death from VA will be ascertained by a local PHC medical officer. It is anticipated that by the end of the year, a detailed analysis of mortality by age, sex and cause for these 2 districts for 2023 could be available.

CR: Yes. Rather, form 2 will stay as the official death report, but will now be supplemented by a VA-derived cause of death to be used for health statistics, instead of the presumptive cause noted on Form 2. But this VA COD will not be called a form 4. Because Form 4 is legally the medical certification by the physician who has observed the death. Here, the physician is basing his opinion on a derived diagnosis in retrospect. So, we are calling it, verbal autopsy cause of death, but the format and the structure is similar to the form 4 of a hospital.

CR: That is a topic in itself. And quite controversial. We should learn from it. But Ill like to take a pass on that. Perhaps its best left for another conversation.

CR: In 2014, WHO developed an indicator for non-communicable disease (NCD) mortality as an important indicator for measuring UHC progress. This indicator for non-communicable disease mortality was defined as the unconditional probability of dying between the ages of 30 and 70 from diabetes, cardiovascular disease, cancers and chronic obstructive lung diseases. The rationale for this age group was that normally deaths from these causes would not happen below the age of 30. And, after the age of 70, there are challenges in accurately measuring what was the actual underlying cause of death because there can be multiple morbidities and age has a leading contribution to make. But we don’t have data on causes of death to be able to filter out how many have died from these four causes as compared to others. So, in my studies, total all-cause mortality in between age 30 and 70 is taken as a proxy.⁶ The bulk of it would be from NCDs, but even other common causes like road traffic accidents, or injuries or alcohol, or tuberculosis HIV and hepatitis-B are preventable.   The term amenable or avoidable mortality has been used to refer to those who could be saved because of healthcare and preventable includes those saved by healthcare as well as prevented by larger public health interventions.  So “preventable mortality” term can be used as the unconditional probability of dying between the age of 30 and 70 and the estimated population in this age group is the denominator. But I would caution that such definitions and terms are still evolving.

TS: Thanks for this interview. I know that we have kept to the overview and not gone into the much greater depths that you are capable of.  Much of this information is basic, but just impossible to access elsewhere. So, thank you. One reason why we have chosen this topic, is also as an appeal to all our schools of public health and departments of preventive and social medicine, to get engaged in providing support to state governments to generate reliable all-cause mortality data at the state and district level, which would immensely benefit public health action by the government and civil society and enhance their own efforts in public health research. This also makes for data sovereignty and federalism. Where the countries and states have the capacity to generate, own and use their own high-quality public health data and not become dependent on block-boxed estimates which are difficult to verify or replicate.