The Indian Council of Medical Research (ICMR) has kicked off the process to setup a clinical registry for COVID-19 in India. This is a welcome development and one that has been long-pending. The lack of reliable data (forget normalized data) has been a major problem in bettering outcomes in healthcare in India.
India has conditions and factors that are unique when it comes to the health of its people, but the data collection quality and coverage is abysmal, leading to a situation where we don’t understand our diseases at the treatment stage, nor do we understand them when people die of those same diseases.
To give you an idea of how bad the situation is, cancer, which has over two million patients in India and kills nearly 300,000 in a year here, has the National Cancer Registry program data last released in 2014. We barely know anything at a national level about this horrible disease.
Part of the problem is that setting up clinical registries involve a lot of manual work, without any monetary benefits for the participating hospitals. This is one place where India’s obsession with scooping up data from everywhere has missed the bus. Ironically, it is one place where anonymized data collection can do wonders, but it is not a sexy product or a platform.
Ideally, the middle of a pandemic that is still not under control in India is not the best time to do this. But, that is a different story altogether. We desperately need a framework to build clinical registries that is open source and built with public participation. The current administration’s preference has been to let some of the stakeholders design the frameworks, while end-users have no representation or participation.
A well-implemented registry can preserve patient anonymity and also present a picture of the country’s health without lag that runs into months, weeks or years. It can be done, but that does not mean it will be done, if recent experience is anything to go by.
We’re still at the Letter of Intent stage. How this develops is something we have to keep a close eye on.