A year and a half into the pandemic and two months before India’s only national-level source of disaggregated Covid-19 data ceases operations, India’s official Covid data remain wanting.

A team of researchers in a new preprint paper estimate that by early June, age and gender distribution was available for just one in five reported Covid-19 cases and deaths, and comorbidity distribution for less than one in three reported deaths in India.

Varun Vasudevan and Abeynaya Gnanasekaran, doctoral candidates at the Stanford Institute for Computational & Mathematical Engineering, along with researchers at the All India Institute of Medical Sciences and Center for Disease Dynamics, Economics & Policy in New Delhi, assessed over 100 web and mobile digital platforms hosted by the Union and state governments for reporting data on Covid-19 surveillance, vaccinations and bed availability between May 22 and June 5. The study builds on two earlier papers on disparities in India’s Covid-19 reporting by Vasudevan and Gnanasekaran.

Lack of data

The researchers scored states and Union territories on 45 surveillance indicators that covered availability, accessibility, granularity and privacy violations in the reporting of confirmed, deceased, recovered, quarantined and critical/ICU (intensive care unit) Covid-19 cases. They found that MyGov, the central government platform that currently provides the most Covid-19 data, does not provide granular information such as data stratified by districts, age, gender or comorbidity.

In April this year, over 200 scientists had written to the prime minister seeking access to the testing and clinical data collected by the Indian Council of Medical Research, but the data remain firmly walled in. Without this data, the scientists said, research on the virus and the immune response to it as well as vaccines were hamstrung. The lack of disaggregated data on cases and deaths, meanwhile, has made inter-state and inter-district comparisons difficult.

“MyGov is a citizen engagement platform that reports data provided to us by the Ministry of Health and Family Welfare,” MyGov CEO Abhishek Singh told IndiaSpend. “Even though some states may have disaggregated data, we cannot collect all the data from the ground up – we need to follow a single source.”

Among states, Nagaland scored the highest by reporting cumulative Covid-19 cases and deaths disaggregated by age and gender and cumulative deaths disaggregated by comorbidities through its weekly bulletins. “It is a whole of government approach led by the chief secretary,” Nagaland’s Principal Secretary (Health and Family Welfare) Amardeep Singh Bhatia told IndiaSpend. The capacity to produce these data was available in-house within the government.

“The Integrated Disease Surveillance Programme team and the Information Technology department work together on this,” Bhatia said. While some other states collect these data but do not make it available to the public, that was never a consideration for the Nagaland government, Bhatia said.

Nagaland is followed by Kerala and Odisha in terms of good Covid-19 surveillance reporting. In contrast, the lowest-scoring states including Delhi, Goa and Manipur report little or no granular data. States such as Telangana do not report historical data stratified by districts. Uttar Pradesh and Bihar, meanwhile, have no official websites to disseminate Covid-19 data.

Vaccination data

On vaccinations, the researchers found that the Ministry of Health and Family Welfare’s CoWIN dashboard does not report total vaccinations stratified by eligibility category for each dose, and does not report the number of severe and serious adverse events post immunisation separately, or disaggregated by vaccine type.

At the state level, only 14 of 36 states report the total vaccinations stratified by the eligibility category for each dose. Karnataka is the only state that reports the number of severe and serious adverse events post immunisation cases separately.

On bed availability, 20 of 36 states and Union Territories report these by hospitals, and frequently update the data, while other states either do not publish any data on vacant bed availability or are reporting the total/vacant number of beds without classifying them.

Reporting by states

Moreover, the researchers find that some states that were doing a good job of reporting Covid-19 data have taken steps backwards. Karnataka, the state with the best surveillance reporting in 2020, no longer publishes the “war-room bulletins” that had age and gender data for cases.

The bulletins are, however, available on a closed WhatsApp group of journalists and officials, IndiaSpend found. “Some of the officials involved with the war room have been reassigned,” an official associated with the war room told IndiaSpend. “There are more resources than before, but less investment in terms of care and attention to detail.”

Kerala, meanwhile, has stopped reporting comorbidity for deaths, while Jharkhand, which reported granular data in the initial months, stopped reporting age and gender data as the second wave hit.

While essential data were lacking on the one hand, multiple states including Chandigarh and Haryana released personally identifiable data of people in quarantine that appeared to serve no epidemiological purpose. This is despite a recent white paper from NITI Aayog on public health surveillance in India emphasising the importance of privacy.

The researchers urged that the Union government create national guidelines on the data that states or districts must make public. However, existing national guidelines on data disclosure remain on paper. Despite India’s official ICMR guidelines including a World Health Organization code for recording suspected Covid-19 deaths, no state has included a suspected Covid-19 death in its published data, Prashant Mathur, director of the National Centre for Disease Informatics and Research, who authored these guidelines, told IndiaSpend.

The pre-print paper highlighting these data gaps have come even as covid19india.org, a volunteer-driven crowd-sourced non-governmental effort that is the only source of disaggregated, historical and downloadable Covid-19 data for India, announced that they would cease operations from October 31. At least two government agencies have been in touch after a social media storm over their announcement, a team member who wanted to remain anonymous told IndiaSpend, but nothing concrete was in place yet, he said.

“We cannot replace or take over covid19india.org. It is best that some data remains independent of government,” Singh said.

Devangee Halder and Gandhar Joshi, students of economics at Gokhale Institute, Pune, provided research assistance for this article.

This article first appeared on IndiaSpend, a data-driven and public-interest journalism non-profit.