Data journalist Rukmini S has to rely on volunteer-driven groups like covid19india.org for historical data

In order to ensure better predictions of the spread, the members demanded immediate access to large-scale genomic surveillance for new variants, testing and 
clinical data, the clinical outcomes of hospitalised patients, and immune response to vaccination in the population.

Poll

Who will win the Punjab Elections?

BJP 32.76%

AAP 43.10%

INC 24.14%

Submit

View All In Poll

The urgency of the demand has stemmed from a shocking crisis, where shortage of hospital beds, oxygen, medicines and a haphazard vaccination programme, mean that more effective health plans need to be created, and immediately, if India hopes to come out of this less scarred. “You can’t walk out of the pandemic without charting a path, and data is that path,” says an emphatic Dr Prabhat Jha, epidemiologist at the University of Toronto. 

Dr Jha, who has been most vocal about lack of data-sharing and the undercounting of cases and deaths in India, says he recently wrote to the Union Health Ministry and Union Home Minister Amit Shah requesting that data be made available to the research community in the interest of the country. “It is absolutely what India needs to do if it’s going to brace itself for the third wave. Otherwise, unfortunately, we will be condemned to repeat cycles,” he tells mid-day in a telephonic interview. 

Dr Prabhat Jha, an epidemiologist at the University of Toronto, recently wrote to the Union Health Ministry and Union Home Minister Amit Shah requesting that complete Covid-19 data be made available to the research community in the interest of the country; (right) Dr Gautam I Menon, infectious disease modeller from the Institute of Mathematical Sciences, Chennai, one of the signatories of the appeal sent to the PM, says the ICMR has been collecting a fair amount of data from Covid-19 diagnostic tests on suspected patients, but has not shared it with anyone outside the government

So, why exactly do we need to declare Covid-19 data? It’s a question that though simple, has a complex answer. Giridara Gopal Parameswaran, an epidemiologist and lead at the India COVID Apex Research Team (iCART), a volunteer research and development group, which comprises professionals and students from multiple fields, says that whenever there is a disease outbreak, it involves a long trail. “It’s not that Covid-19 happened out of nowhere. It’s a process. A paradigm of events occurred within a community, where one infectious person spread it to another, and from there on people who got exposed, started developing symptoms. A few of those with symptoms would have then sought testing; once the testing was done, there would be a confirmed case, and after a delay of six to seven days, depending on the person’s immunity, the person’s case would get severe or become complicated, and he or she would then get hospitalised. After a few more days, the person would go into ICU, and then later, could need a ventilator,” he explains.
 
This chain of events, he says, come together to create a story. “At every stage of this process, we have the opportunity to collect certain data points. This information will help us understand whether we are running with the epidemic, or if we are lagging behind, or are in the front of this fight,” he adds.

At this point, the only kind of data that is being made available to researchers like him is the daily active infection case counts, deaths and hospitalisations, says Dr Gautam I Menon, infectious disease modeller from the Institute of Mathematical Sciences, Chennai, who is also one of the signatories of the appeal sent to the PM. The Indian Council of Medical Research (ICMR), the apex India body for the formulation, coordination and promotion of biomedical research, which is currently charged with relaying all Coronavirus information, has been collecting a fair amount of data from Covid-19 diagnostic tests on suspected patients. This includes the age, gender, and other demographics of the patient, as well as details of where the test was done, and if there was prior vaccination involved. “However, this information is not available to anyone outside the government,” he says. “Further, there is no evidence that this data is being mined to extract all available information that it could potentially contain.” The scientific community, Dr Menon alleges, has not been taken into confidence, and “even told if the ICMR and other government organisations have the special capabilities required and cutting-edge technology to analyse this data, and squeeze all the information from it”.

Giridara Gopal Parameswaran

Explaining how such data can be put to great use by scientists, Dr Jha says, “If they release this data, and someone very quickly, working 24 hours non-stop, were to put this on a website, you would know right away, where the hotspots of transmission are, and where, the vaccine is reaching.”

The most imminent interest for accessing this data is to prepare for the third viral wave, which K Vijay Raghavan, Principal Scientific Advisor to the Government of India, said this week was “inevitable”. “The current vaccination rate in India is 0.2 per cent of the population per day. This means that even by June, when we all hope that the second wave is nearly over, only about 20 per cent of Indians would be vaccinated,” says Dr Jha. That’s far from sufficient to fend off another surge. 
He cites the example of Ontario in Canada, which was experiencing severe vaccine shortage. “We had a very limited number of vaccines, so we decided to target the hotspot pin codes of the province, in order to try and reduce the infection spread. It seems to be working. For India too, this is the most practical thing to do now,” feels Dr Jha.

Another major issue in India is the absence of historical data on the ICMR’s website. Apart from the total case load and deaths, the ICMR only shows the total number of samples tested for each day, and the cumulative samples tested. “In such a scenario, we have all come to rely on crowdsourced volunteer-driven groups like covid19india.org, which aggregates purely official data. But, this is the core job of the government,” says data journalist Rukmini S.

Parameswaran argues that for epidemiologists, historical data is most essential in picking up key insights about the virus. “There will always be some behaviour that the virus will leave in the community. Going back to these patterns will make it easier to decipher the problem. We use references from the past, like mortality and testing trends, to understand if the virus is spreading faster, is the contract tracing actually working, are we having more severe cases this time round, etc,” he says. He gives the example of how during the first wave, the ICMR was also testing asymptomatic people. “But this time, testing is only for symptomatic patients. When you compare such strategies from the past with the present ones, you can make better sense [of what’s not working at this point]. Without historical data, this is going to be a blind-folded fight,” he thinks. 

According to Rukmini, even Latin American countries have government websites, which update information in real-time that are easy to understand and available for download. “Having covered the Indian administration for a while, I am very pragmatic about what the government can and cannot do. But, this [kind of data sharing] requires very basic IP abilities, and the government can easily make it available. If other developing countries are doing it, why can’t we? I am very disappointed that even a year on, we have still not managed to build enough public pressure, so that the government releases this information.”

An important concern raised by the scientists in their appeal is the lack of surveillance data based on genome-sequencing of the Coronavirus.

In their appeal, they have said that the Indian SARS-CoV-2 Consortium on Genomics (INSACOG), established for genomic surveillance, is only sequencing the Coronavirus from about one per cent of infected individuals. 

“Increase of sequencing volume and simultaneous collection of clinical data from the infected individuals are crucial to understanding whether a mutated virus is more virulent,” they wrote.

Dr Jha says that a systematic effort needs to be made to rope in private and academic labs, and have an India-wide genome sequencing strategy in place. “They could take cases from all over India, randomly selected, try to have them sequenced, and put the data up on a website, for everyone to see.” He says today, it’s because of the efforts of Professor Zhang Yongzhen, the Chinese scientist, who bravely sequenced the first Covid-19 genome, and put it up on a website, that many lives could be saved across the world. “A German scientist looked at that sequence and was able to create a diagnostic test within days,” he adds.  

The concern about breaching privacy, if any, can also be addressed easily, says Dr Menon. “A lot of this information is personal, and hence, should be protected. However, computer and data scientists have evolved methods that concentrate precisely on this question, which is how to anonymise data, by removing the connection from the person whom this information originated from. Data scientists can ensure top-level protection. But unless it is made available to them before releasing it, this cannot be done.”

Irrespective of what data is being made available, and what is not, the biggest challenge in the fight against the pandemic in India is currently the undercounting. “All countries undercount to some extent,” admits Dr Menon. “Unless you have near universal testing, you will not pick up all the cases; you will only pick up a fraction of them, particularly those with symptoms. But, one must ask, if we are at least picking up the symptomatic cases accurately, and the answer in India is no. The reason is that there are many pockets of the country, especially rural India, where people, who have symptoms and would like to get tested, are unable to do so, because tests are not available.”

Since the testing numbers don’t tell the whole story, of the size of the epidemic, Dr Jha says he pays attention to data available on mortality. “We can say that the pandemic curve is flattening in Mumbai right now, because the reported number of deaths in Mumbai is plateauing. I trust those numbers more than I trust the [number of] virus cases.”

He feels that to understand the extent of the spread of the pandemic in rural India, where proper records of deaths may not be maintained, let alone those who lost their lives specifically to Covid-19, the government must revive the Million Death Study (MDS), a human premature mortality study conducted in India, which began in 1998 and ended in 2014. “As part of the survey, which was primarily carried out in rural areas, teams were sent out every six months to find out who had died in every home. If someone died, they’d fill up a verbal autopsy form. This study needs to urgently be reactivated. It’s only then that India will have a clear answer as to whether in rural areas there was a big increase in deaths, over the last two years and why.”

At the moment, Parameswaran says we are only seeing reported numbers or figures that are officially released by government agencies. The estimated numbers are 20 times higher. “If you are hearing agencies say there are four lakh cases every day, you should assume there are 80 to 90 lakh cases in the community. This is where data is important. As a policy maker, I should not be planning for four lakh cases, but for the estimated numbers,” he says.

Earlier last week, the office of the Principal Scientific Advisor (PSA), in response to the appeal made by the scientists, had asked research collaboratives to create a mechanism to widely share available and new datasets and even asked INSACOG to reach out to more partners, including independently supported ones, to expand genomic sequencing in India. Raghavan’s prompt response may come as a ray of hope for scientists, but Rukmini feels that greater transparency is needed. “We should have similar petitions directed to the health ministry as well. [In India] there is this attitude, that if you want information, you should put an RTI request. It should be the other way round. Give it to us without us asking. We have failed to create a culture where citizens know that access to data is their right, and not having it, is a violation of their rights.”