Covid data registry a welcome idea – it will help understand the infection better

By: |
August 8, 2020 5:40 AM

It will help understand the disease better, allowing better response; but first, govt must fix a few kinks

But given how the outbreak seems far from over, even the late start is welcome; it will help researchers, healthcare personnel and policymakers understand the disease better, and shape more effective response.But given how the outbreak seems far from over, even the late start is welcome; it will help researchers, healthcare personnel and policymakers understand the disease better, and shape more effective response.

A National Clinical Registry of Covid-19 (NCRC), that will collect data from dedicated Covid-19 hospitals to track clinical, treatment, and other assorted data pertaining to hospitalised Covid-19 patients is a bit late in the day—of the 2 million cases reported by India so far, 1.3 million have recovered, and, that is 1.3 million data subjects lost already. But given how the outbreak seems far from over, even the late start is welcome; it will help researchers, healthcare personnel and policymakers understand the disease better, and shape more effective response. As the Indian Council of Medical Research (ICMR) has pointed out in its letter to 100 Covid-19 hospitals soliciting their participation in the NCRC, a national registry can help on multiple fronts—the data collection and standards will be overseen by 15 top medical research institutions in the country, which will also train the personnel at the participating hospitals on the collection of the data; the data will be uploaded as per a proforma so that it is available in a standardised manner.

Given how there are many gaps in our understanding of the pathogen and the disease, the importance of national databases that establish trends on disease manifestation (symptoms, severity, link with co-morbidities, age, etc), treatment protocols, patient management protocols, outcomes, after-effects, etc, can’t be stressed enough. Indeed, the ICMR is also looking at understanding the pathogen’s effect amongst children—who have been believed, very likely erroneously, to be largely safe from the disease, though there have been signs of immunomodulatory and inflammatory conditions with suspected strong links to Covid-19—through the database. A strong database and continued monitoring of patients will help look at the disease in a granular manner across verticals, which can then inform the larger-picture vision. To that end, the ICMR talking of a year’s tenure—present for the database—and central funding for participating hospitals is quite welcome. Belgium, Finland, Germany, South Africa, The Netherlands, South Korea, among others, have already rolled out massive Covid-19-specific data gathering and analytics framework; some of these countries have also tied their national response to the pandemic to data-backed, evidence-informed approaches. National registers or databases will also be the backbone of global collaboration to beat the pandemic.

That said, the ICMR and AIIMS, which will be creating and managing the NCRC, will have to ensure that there is adequate sharing of data and transparency—even now, many state and local governments have not been sharing something as basic as testing data—and address issues of data collection rigour. That will need a more structured policy architecture that will lead to the generation of data. To illustrate, the decision to declare recoveries without testing, based on remission of symptoms, will cloud accuracy of data on actual patient management and treatment protocols; if a person is declared cured based of certain symptoms abating and becoming absent over a period than actual RT-PCR testing, there is no way to authoritatively say that the relevant patient management protocol will prove effective in other cases, too. Also, this complicates the understanding of viral latency, re-infection, etc. For the purposes of the NCRC, the government will have to ensure that policies leading to data generation are adjusted to ensure the rigour of data collection and facilitate analytics. Another key point will be transparency, if reports based on NCRC data are made available publicly, as has been proposed, this would largely have been addressed.

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