Access to data is critical for policy-making

IT is often said that data is the new oil. In times of a pandemic like the current one, data can help formulate policies to save people’s lives and livelihoods. India has recorded over 26 lakh confirmed cases and more than 51,000 deaths due to the novel coronavirus infection so far. The number of active cases is nearly 7 lakh. The cases have been reported from all the states and union territories, covering all districts barring a couple of them in the Northeast. None of the earlier pandemics in this century have affected India in this manner, accounting for such a huge number of deaths. The pandemic has also necessitated administrative and control measures like lockdowns, creation of containment zones, restriction on transport services, closure of educational institutions and so on.

All this — the spread of the pandemic and the implementation of the control measures such as nationwide and state-level lockdowns — have yielded a huge amount of data. It can be used to generate new knowledge and gain insights which can then be deployed for better management and control of the pandemic. Data about the progression of the disease should not be confused with ongoing scientific work to hunt for new vaccines and treatments. While Indian scientists have progressed on candidate vaccines and therapeutic agents against the novel coronavirus, they appear to be lagging in research based on epidemiological and medical data.

The Indian scientific community, known for a great appetite for publishing research papers, is trailing when it comes to research relating to the current pandemic. Just a handful of Indian studies have been published in international peer-reviewed journals, compared to dozens of papers from China, the US, Spain and other countries on different aspects of the new disease. Here, the reference is not to modelling studies but those based on real data and medical records. For instance, we don’t yet have a thorough analysis of the mortality data. There are questions over under-reporting of deaths as many are being wrongly attributed to underlying problems like diabetes and heart disease.

Lack of disease-specific studies would normally be due to lack of data and lack of access to data. Clearly, lack of data is not the reason in the present case. A huge amount of data is being collected from the national to district levels. Two apex scientific agencies — the Indian Council of Medical Research (ICMR) and the National Centre for Disease Control (NCDC) — are collecting data on different aspects of the disease. At the administrative level, the ministries of health and family welfare, and home affairs have their own channels of data collection like the Aarogya Setu mobile app. In addition, agencies like the Registrar of Births and Deaths and the Census Commissioner’s office which collates Medical Certification of Cause of Death (MCCD) data. Another set of bodies collecting data are municipal corporations. Every hospital — public or private — treating Covid-19 patients is also generating tons of medical data (progression of the disease, treatment given, impact of co-morbidities, ICU management etc.) In effect, we are sitting on a great amount of epidemiological and medical data relating to Covid-19.

This shifts the focus to the second reason — lack of access to data. Central government agencies have been releasing state-wise data about the number of tests, new infections, deaths, case fatality rate (CFR), recovery rate on a daily basis. The CFR does not give the true burden of the disease since it shows fatalities only in confirmed cases. On the other hand, the infection fatality ratio (IFR) indicates deaths occurring among all infected persons and is based on the results of serological testing. A nationwide or state-wide CFR also masks intra-hospital or intra-district variations.

More detailed, granular data is needed for taking location-specific control and management decisions. For instance, many big cities include rural pockets as well, and many districts have towns and villages. The disease may be progressing differently within a metro or district, which the overall figure does not reflect. More important, age-wise and gender-wise data about infection and mortality is not being released. So is data related to different socio-economic strata and the situation within hotspots and containment zones. Access and analysis of such data should not be seen as an academic exercise but as a valuable input that can guide better management of the pandemic, thus potentially saving lives.

Besides epidemiological data collected by official agencies, government and private hospitals are sitting on medical data — information about how exactly patients are being treated, how serious ones are being managed, and the reasons for mortality as well as recovery. One can argue that hospitals, particularly state-run, don’t maintain electronic medical records. But they prepare discharge summaries for each patient, which are either digitised or can easily be digitised and made available for analysis and research. It may help scientists answer dozens of unanswered questions about the disease.

Clearly, there is unwillingness on the part of Central agencies like the ICMR to share data or facilitate sharing by agencies and hospitals collecting it. It is a pity that despite boasting of huge research manpower and infrastructure, Covid-19 management and critical policies (relating to unlocking, for instance) in the country should be guided by modelling studies and knowledge generated elsewhere. The pandemic is a major opportunity for Indian scientific and public health community to directly contribute to the well-being of the people by helping in the formulation of evidence-based policies. Policies relating to opening up markets or movement across state borders, quarantine etc should be based on evidence generated by real-time data. Instead, government agencies are denying access to data and preventing scientific studies, as demonstrated in the case of the serological study in which names of districts with evidence of community transmission were censored before it was published. The ICMR has acted like this previously with research relating to the Bhopal gas tragedy and antibiotic resistance due to the NDM-1 superbug. Now, it is the turn of Covid-19.