A couple of nights ago, a handful of journalist colleagues and data experts convened on a Zoom call to discuss how to identify the undocumented COVID-19 deaths in India. We shared our individual data collated as part of our daily reporting, hoping to find a well-grounded method to fill these gaps in the death data that the Union and state governments continue to leave unaddressed. We soon realised that compiling and verifying the data would be a Herculean task as it requires accessing civil registries, visiting crematoriums, filing RTIs and comparing these with the thousands of district, state and national bulletins. A sense of uncertainty permeated our voices as we signed off, but we were determined to keep trying.
We were not the only group engaged in this data gap analysis process (some examples are here, here and here). In fact, the under-reporting of COVID-19 deaths, total tests and daily infections and the lack of vaccine supply chain transparency by the governments, are currently an aggressively discussed issue among the media and scientific communities. But, that is us on one side. On the other side of the fence is the government that underplays the fight of every COVID-19 victim to beat the virus, relegating them to mere numbers, or rather, fudged figures. “We don’t have to play with the COVID-19 death data. A dead person is not going to come alive because of the uproar we create,” remarked Haryana Chief Minister Manohar Lal Khattar recently.
Scientists and medical researchers begged the Union government to share the data on the patterns and severity of the COVID-19 infections in its possession. “It could answer key questions: Which districts are most vulnerable? Do vaccines work against (the COVID-19 virus) variants? How to prevent a third wave?” biologist Mukund Thattai tweeted recently amid the renewed appeal to the government.
Appreciate fast response from @PrinSciAdvGoI: https://t.co/r35XAc0cAG.
— Mukund Thattai (@thattai) April 30, 2021
These data sharing protocols allow researchers to analyse/share Covid data they have gathered. It will be useful to have a list of datasets available from ICMR, and a protocol for them to be rapidly shared. pic.twitter.com/jbPgWDhyiY
Reporters and photographers, too, are doing their bit every day. They go directly to the crematoriums, hospitals, houses of COVID-19 victims to show how the ground reality (good data) is worryingly contradictory to the government data.
Even as many experts are trying to fill the missing data on their own, the state governments are pulling the plug — either by covering up crematories and banning photography/videography, or by discontinuing sharing of certain data.
In an interview to Bloomberg, Himanshu Sikka, Chief Strategy Officer (Health) at development consulting firm IPE Global, warned that if the government is not stepping in with accurate data, such media coverage of the rising cremations could be passed off as anecdotal cases, giving the impression that the situation is under control. “This impacts the future preparations and measures to be taken for a possible third wave of COVID-19,” he noted.
someone did the math the other day. If there are 750 districts in the country and each has about 100 cremetoriums. Thats 75000 of them. and if each one is overflowing then how many deaths are really happening everyday. The official number is 3500
— Andolanjeevi (@vikramdelhi) May 2, 2021
Yet, instead of viewing these appeals for data as life-saving measures and to strengthen the health infrastructure, the Narendra Modi-led Union government (and states) has been committing a series of mistakes. The government ignored the input or data from the epidemiologist and scientists. It did not fund the genome sequencing exercise when the new variants of the COVID-19 virus were detected last year. As a result, it slowed down and the public was informed only by end-March 2021 when the country was already at the doorstep of a second wave. The government(s) withheld vital information from experts and the public, presenting skewed or incomplete information (bad data), which could have probably saved more lives.
This indifference towards the importance of good data was nothing short of committing a grave crime, one that has ramifications not just the ones living through the pandemic but for the coming generation. In fact, it violates Article 21 of the Constitution, which guarantees the right to life and personal liberty. The Supreme Court, in many judgments, have said that the failure of the government to provide timely medical attention amounts to the violation of Article 21.
Many asked scientists and journalists why they are clamouring for data in the middle of a pandemic than focusing on saving lives. You’re probably right! Now is not the right time to debate about data on the COVID-19 deaths. But if not now, when, especially when the Indian government has historically failed to record officially document deaths?
"India has a poor and delayed infrastructure for reporting deaths and certifying the cause of death in general, especially in rural areas. In a 2017 estimate, only one out of five deaths were medically reported… India has not made historical mortality data and data from 2020 publicly available, making this calculation (of excess COVID-19 deaths) infeasible at this point," wrote Bhramar Mukherjee, chair of Biostatistics at the University of Michigan School of Public Health, in the article titled, "Under-reporting does hurt the COVID fight". She was one of the few biodata experts who warned about the possibility of a second wave, in February 2021.
We see increase in cases in many states now.
— Bhramar Mukherjee (@BhramarBioStat) February 28, 2021
The effective R is above unity, and our metrics table not looking too promising.
We can do our part:
Double masking
Avoid Large Gatherings
Sanitization
Get vaccine when our turn comes.
Policymakers:
Scale up vaccine roll out. 2/2 pic.twitter.com/a6P3T4Aoek
In fact, after the Nipah virus outbreak in 2018, the World Health Organisation pointed out that Kerala had to “improvise” its initial response, primarily because India failed to share the data when the disease was first reported in West Bengal in 2001 and 2007. Had the Indian government shared its response data earlier, Kerala probably would not have been left on its own.
There are multifold reasons to explain why we need data — information in the form of facts and numbers. A simple example: Scientists across the globe used their 18 years of research data on coronavirus in human beings to develop vaccines in a record time of less than one year.
The most important need for scientific data is to assess the existing surveillance strategy and health care system of a state/country. For instance, according to an estimate by news website Down To Earth, 50.8% of the COVID-19 deaths in April 2021 was from rural districts. Why should the government sit up and take note? According to the 2019 estimate by the World Bank, the rural population accounts for over 65% of the total population in India. Yet, only 37.15% of the beds at government hospitals across India are in rural regions, although there are more government hospitals in rural areas than urban regions, according to the the National Health Profile 2019.
The National Health Profile 2019
So, if more than half of the deaths are indeed being reported in rural areas, the government needs to reassess its existing medical infrastructure there, divert more resources and probably mobilise more volunteers to address their fears of taking the COVID-19 test and vaccine as well as plausible economic crisis.
They must use their existing database (if there is one; if not, it’s time to start) to identify people who cannot access to health care system even in normal circumstances — due to social factors (caste discrimination), administrative hurdles (lack of documents for refugees and foreign migrants) and accessibility factors (no roads for ambulances). This could substantially ensure timely medical treatment, avoid deaths and even undignified burial/cremation of bodies.
For scientific reasons, each parameter within a set of data plays a crucial role. Understanding the age of the deceased or infected person helps epidemiologists understand how the disease impacts various age groups. Listing symptoms could help flag new symptoms. Mentioning underlying health conditions can alert doctors and the public to take precautions. Similarly, gender, date of discharge, date of death and number of (actual) tests are critical input from the government that need to be documented and made public.
“If I die of COVID-19, I give permission to every reporter around to film/cover my funeral/cremation/burial, whatever, irrespective of what my relatives say. I don't want to be a fudged data point if I die,” wrote a Twitter user amid reports of under-reporting deaths. Many concurred. This tweet underscores the fundamental truth that the 'cases' are not just figures on a spreadsheet, but people.
Ignoring data (even after experts have raised a red flag) is equivalent to letting hundreds die without adequate infrastructure, letting the bodies pile up, be ferried in garbage trucks or dumped in a river, making families double as health care providers in finding medicines and desperately resuscitating their loved ones. This is a gross violation of basic human rights.
Besides, not acknowledging deaths as COVID-19 and reconciling that data denies the families of the victims, including health care providers, their right to access government schemes and insurance. This only furthers the stress on their livelihoods.
Here is what governments can do, lest the public is caught up in another wave, pandemic or outbreak.
> Acknowledge when there is a crisis than whitewashing and criticising the public. It will be an enormous, welcome move from the Modi government.
> Listen to reasoning by scientific experts than pushing unscientific or unproven methods.
> Make COVID-19 data accurate, transparent and public: It helps scientists formulate models to informs the governments and existing healthcare systems if it needs to increase testing, scale up the reserve of beds and oxygen supply, and even recommend non-pharmaceutical interventions, such as a lockdown.
> Invest in research and development: Unfortunately, the Union Finance Ministry cut the spending on health research in the 2021-2022 Budget by 34.3%, compared to the revised estimate expenditure (Rs 4,062 crore) for 2020-21. Incidentally, in the Financial Year 2018-2019, India spent only 0.7% of its gross domestic product (GDP) on research and development, which is less than other developing BRICS nations.
> Constitute teams at ward level to collate the daily COVID-19 data (deaths, tests, infections, how many received the vaccine). This should, in turn, be shared with district-level teams, and in turn, the state.
> Encourage and engage local voluntary groups to gather data in their respective regions/communities, as well as tech companies to identify gaps and analyse them.
> Strengthen human resources to watch out for projection models by public health experts, epidemiologists and biostatisticians; alert the officials on time; add infrastructure resources accordingly; and manage public domain to make data transparent and accessible.
Never slow down, even if the transmission of an infectious disease slows down (we have already learnt our lessons). It is always helpful to be prepared for the worse and invest more in the country’s health care infrastructure in every aspect.
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