A digital footprint, but within a public health ecosystem

PT Jyothi Datta | Updated on September 11, 2020 Published on September 11, 2020

Safeguards are required to protect patient data   -  Tero Vesalainen

The National Digital Health Mission must ensure quality individual healthcare with dignity, privacy

It may seem that the novel coronavirus has tipped the argument in favour of a digital backbone for services, including healthcare. That’s because the national lockdown experience saw an increase in the use of online services, be it medicine purchases or doctor consultations over the telephone. Almost on cue for the grand plan of a National Digital Health Mission.

The NDHM (see box) and the “digital ecosystem” it outlines, seek to address the many shortcomings in the present healthcare system. But that is unlikely to be achieved in its present avatar, say public health voices, pointing to flaws in the policy. This week, the extended deadline for comments from the public on the Health Data Management Policy (HDMP), under NDHM, was to lapse, but has been extended to later this month.

But the All India Peoples Science network (AIPSN) and the Jan Swasthya Abhiyan (JSA) say that a wider discussion is needed on both policy and Mission. The HDMP and the NDHM relate only “to governance of digital health — not the governance of the place of digital health within a health ecosystem,” they say.

“What we call for is a governance that ensures that digital health subserves the goals of public health and access to quality individual healthcare with dignity and privacy,” they add.

Health economist and Associate professor at OP Jindal Global University, Indranil says a mega plan should be a step-by-step effort and constantly reviewed. “Why go straight to the last mile and ask for people’s medical records and data? The Government should first put its own procurement data, details on the number of hospitals in the country, beds available, human resources, etc, for the public to have an idea of resources available and where the money is spent,” he says.

Touching on a universal concern over data privacy, he says, “the Government gets access to personal data, but on its part does not share anything. A digital framework should bring greater accountability into the healthcare systems.”

He feels a single health ID gives too much importance to one card, and cites instances where mandatory requirement of an Aadhaar card had reportedly kept people from accessing Government services.

There are multiple documents to establish ID, including the Voter ID card, passport and the Aadhaar card, he points out.

Sachin Taparia, Chairman and Chief Executive of LocalCircles, a community engagement and social media platform, says their survey found the overall mood in favour of a single health ID that helps improve access to hospitals, telemedicine, etc.

“But they did not want to give their sensitive personal information, banking information, sexual orientation, etc. They wanted their data to be stored in a central repository (like the EPFO, for example) so data was not compromised, with authorisation-based access to States and health facilities,” says Taparia.

Anonymised data

People also wanted their information to be anonymised and about 48 per cent did not want it to be given to “research, diagnostics and external agencies,” he says, of the survey that received 34,000 responses from citizens in 272 districts of India.

While making medical records easily available to a doctor treating a patient, safeguards are needed to prevent this information from falling into the wrong hands or being given to marketers. Even regarding consent and authentication, people need to know what they are signing, he says, and stresses the need for the policy to protect citizen data.

Secured through legislation

On the National Health Authority, the AIPSN, JSA noted, “its mandate to manage the NDHM and the HDMP should be secured in law and not through executive orders. The demand is for legislation that covers both data policy and digital health strategy.”

Unlike authorities like the National Highways Authority or Telecom regulatory authority, an Act of Parliament has not created the NHA, the note says. “It was created as the National Health Agency in 2017 for the explicit purpose of managing the PM-JAY, and then by Cabinet order declared an authority and placed under NITI Aayog.”

Outlining the need for greater discussion on the policy, the note concludes, “There is much that digitisation can do to give people more access to information and providers and management ways to improve health outcomes, this NDHM strategy falls far short of it.”

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Published on September 11, 2020
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