India is failing the health data challenge

In March 2023 Siddhesh Zadey was sifting through data on the Indian government’s health insurance programme. To his surprise, from the programme’s website he was able to access a database containing the names of people, the hospitals they were admitted to, the dates on which they were discharged, and the amount they paid for treatment.12

“It provided a lot of information, such as how many people got their insurance cards and how many were admitted to hospital under the programme,” says Zadey, co-founder of the non-profit Association for Socially Applicable Research. “But having personal health information in the public domain is not a great idea. It violates the ethics of privacy and confidentiality.” For instance, names and visits to mental health institutions—as well as insurance payouts—are easily accessible. Given the Indian public’s severe discrimination against those with mental illness, it raises the risk for anyone who has claimed through the programme.

It isn’t the first time Zadey has come across private health information on government websites. During the pandemic, Zadey found that the Chandigarh administration, the capital of the northern states of Punjab and Haryana, posted the names of people under home quarantine, their addresses, and the amount of time they were in isolation. The information is still available on the government website.

In fact, local authorities across India were circulating lists of quarantined people, including their names, passport numbers, addresses, phone numbers, and travel history, on social media and WhatsApp groups, warning citizens to avoid contact with them.34 Multiple government websites also posted the covid-19 test results of thousands of Indians, including their names, age, report identifier numbers, dates of testing, …