How India’s lack of transparency on coronavirus data is hindering the battle against pandemic

The war on Covid-19 is being fought on two fronts. The social/behavioral battle involves measures like following cough etiquette, hand hygiene, physical distancing and the restrictions of the lockdown. The medical front involves treatment and medication (including intensive care), quarantining, isolation, potential vaccines and more. The driver in managing the pandemic across that world is (and has to be) science and data.

When we discuss major Western medical research with one of my senior teachers, a doyen in the field of radiology, he always says, “‘Indians are not white-skinned nor blue-eyed.” In other words, while data from other countries can be helpful in our fight against Covid-19, we need Indian data to really fine-tune our own response.

Why are we not testing enough? When will rapid kits be available in adequate numbers? How are Indian patients faring overall? Are our patients responding to drugs like hydroxychloroquine or anti-HIV medications? Is hydroxychloroquine helping when it is used as a preventive drug?

These are common questions which most doctors have. The answers to them will influence our hospital policies and patient treatment plans. Unfortunately, most of these questions get a vague answer at best.

The iron curtain

Testing, our Achilles heel, remains behind an iron curtain. The Indian Council for Medical Research, the organisation leading India’s fight against Covid-19 (especially with regards to testing), is a scientific research body. One would expect it to release readily accessible and detailed data on India’s testing numbers and trajectory using graphs and charts on its website.

Instead, we see an almost inexplicable antipathy to sharing any sort of data. There is a single daily update on the total number of tests done in India. It is a single-line statement, that “a total of XYZ samples have been tested so far”. It does not even clarify how many patients were tested. This is important since positive patients usually undergo multiple tests before getting discharged.

More distressingly, someone actually takes the effort to remove the previous day’s testing update from the site so that it is not possible to figure out where India’s testing graph is headed. This is much less useful than earlier updates, which said that “XYZ tests on ABC patients performed overall, with so many tests performed yesterday”.

Similarly, the ICMR site mentions 23 rapid-test kits (including nine manufactured in India) have been approved. But several questions remain unanswered. What is the actual number of rapid tests performed? Why is there such a shortage of rapid test kits despite these being produced locally?

The ICMR’s opacity is equally matched by the Union health ministry’s reluctance to share data on patients’ clinical status. Overall, India is not a very medical data-rich country. However, Covid-19 should be an exception to the rule because detailed data for every individual tested for the disease as also information about the treatment and outcomes of all patients across the country is submitted to the National Center for Disease Control. And yet, public data remains sparse for Indian doctors and researchers to sieve through.

For example, how dangerous is mild controlled hypertension or diabetes for Indian Covid-19 patients vs mild uncontrolled cases of these diseases? What are the most common signs and symptoms in those needing in-hospital care? How often have drug toxicities been reported?

These are just a few examples of crucial questions that the authorities can answer, but have chosen not to. If one goes to the Worldometers website for example, the percentage of critical cases across most countries is provided, bar India, as India doesn’t continuously provide this crucial data publicly.

Basic data regarding the number of asymptomatic or mildly symptomatic vs hospitalised and critical patients is occasionally disclosed. But we doctors need much more granular real-time easily accessible data to really give our patients and healthcare facilities the best shot they have.

Prophylaxis remains another unanswered question. While the word is not yet out on the utility of hydroxychloroquine or HCQs for treating Covid-19 patients, India jumped the gun in prescribing the drug to health care workers, among others, as prophylaxis or preventive treatment . We now know that a disproportionate number of health care workers have acquired Covid-19, presumably with a majority of them taking prophylaxis. So then does prophylaxis have any effect? Do health care workers who received HCQs have fewer symptoms than those who did not?

We have already heard of a few deaths due to HCQs prophylaxis. Knowing the actual figures of protection vs toxicity can help health care workers take an informed decision based on an individualised risk-benefit ratio calculation.

The ICMR has given some limited figures on HCQs toxicity, but these figures seem inadequate and difficult to trust as they do not mention deaths and any other cardiac events, with abdominal pain, nausea, and hypoglycemia being the side-effects as per their data. We certainly need more clarity on this issue.

The ICMR and some other institutes are carrying out some trials right now, including on HCQs prophylaxis and plasma therapy, and hopefully these may give some answers.

The need for evidence

It is also important to realise that doctors always want to treat patients based on evidence and logic, and not simple bulleted guidelines without the underlying rationale being explained.

A casual look at any Western guideline document will demonstrate reams of citations and references backing their recommendations, with levels of evidence provided for every recommendation. Compare this with the Indian guidelines and we realise that we have a very long way to go, starting right from transparency about who has created the guidelines, their thought processes and evidence used, to even professionalism in their dissemination.

The Municipal Corporation of Greater Mumbai guidelines, for example, are not available online and are shared on Whatsapp as a scanned or photographed copy of the circular. These guidelines look more like bureaucratic orders than scientific documents, hardly the way to inspire confidence in the medical fraternity.

In addition to sharing this readily available data, India also needs to develop predictive models to decide the best strategy at balancing Covid care vs the other aspects of healthcare. For example, research in UK shows that almost 18,000 excess cancer deaths may occur this year in UK due to the lockdown, while the World Health Organisation and UNAIDS data shows that almost half a million patients could die of HIV in Africa alone if there is a six-month disruption in anti-retroviral therapy.

Compare these estimates with the slightly over 2,700 reported COVID deaths in India at present. The lockdown was implemented to save lives despite the economic setbacks it causes. We now need our own data and statistical predictions to ensure that the cure does not become worse than the disease even on the medical front.

The lack of data being made available to the medical and scientific fraternity is becoming a huge limiting factor in our fight against Covid-19. It has forced us to rely on Chinese or Western data, on anecdotal reports (often forwarded by doctors as Whatsapp messages) or simply on conjecture and hope. None of these are great strategies to tackle the pandemic. India needs to drastically improve the quantity and quality of data it produces, analyses, and shares to give us and our patients a level-playing field.

Dr Akshay Baheti is an assistant professor in radiology at a hospital in Mumbai. Views are personal.