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Health data cannot be fragmented and inaccessible. Modi govt needs a policy revamp

The discussion around the exchange of personal and sensitive health info has largely focused on aspects of security and privacy of the data.

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All over the world, Covid-19 has cast a spotlight on healthcare access and availability of resources, personnel, supply chains, and associated infrastructure. Data has driven decision-making in high-income countries, and its lack thereof in other countries has hampered weaker healthcare systems.

The government’s project to digitise healthcare — the National Digital Health Mission (NDHM) — aims to develop an integrated digital health infrastructure and ecosystem that enables universal coverage of healthcare that is efficient, affordable, accessible, inclusive, timely, and safe. The initial focus of NDHM has been interoperability between various kinds of health data, including unique digital health IDs, digital health records, and repositories of healthcare professionals and health facilities. The intent is to address information asymmetries in the healthcare ecosystem by connecting patients with healthcare providers.

The NDHM now seeks to expand its scope by connecting stakeholders, including patients, healthcare providers, and policymakers, with value-added digital health services through the Unified Health Interface (UHI). The UHI is an open protocol that will permit seamless interoperability between health data and user-facing digital health applications for the provision of a range of digital health services including appointment bookings, teleconsultation, and locating pharmacies or even hospital beds. These activities are poised to further amplify the explosion of health data in India.

Also Read: Scientific data was India’s strength in polio, leprosy fight. In Covid, it’s a silent victim

Health data is crucial

Health data is a crucial input for improved healthcare delivery and outcomes. Its use is envisaged for better patient care (both in terms of services and access), governance, program delivery, measurement of impact, and, more importantly, medical research. So far, current NDHM policies, including the proposed UHI, emphasise activities that improve individual access to healthcare and with the potential to generate economic value. However, a less focused yet equally important application of health data is towards public health research that supports effective health interventions, innovation, and evidence-based policymaking to enhance our collective wellbeing.

Much of the discussion around the exchange of personal and sensitive health information for various purposes, including research, has largely focused on aspects of security and privacy of the data. These are clearly essential to protect data owners and engender trust in the system. But there are additional issues related to health data relevant to public health research that need urgent redressal. We focus on three key aspects.

First, public health data is fragmented, non-standard, with concerns about quality, reliability, and usability. Currently, the data ecosystem consists of multiple and parallel programs and agencies at central, state, and local facility levels. Many programs such as Health Management Information System, Reproductive and Child Health portal, and Integrated Disease Surveillance function in silos leading to multiple ownerships with little interoperability. Most datasets are also riddled with duplication, redundancies, ambiguities, gaps, and excess data collection. All of this impedes effective analysis and decision-making.

The redundancy of data collection also carries a hidden cost – time that healthcare workers could spend towards caregiving. These issues can be tackled by taking a more strategic and goal-oriented approach to collecting public health data, making interoperability a core tenet and effectively training and supporting health workers at the forefront of data collection.

Second, a large quantity of health data in the country is produced by the private sector including non-governmental organisations, colleges, and research institutes in the health sector. To put this in perspective, a survey conducted by the National Sample Survey Office in 2014 found that 72 per cent of the rural and 79 per cent of the urban population obtained their treatment from private hospitals. There is little to no data reported from these sources. It is pertinent to note that participation in the NDHM ecosystem is voluntary. The government must, therefore, engage with private healthcare providers to facilitate access to this data for research.

Third, there is a need to improve access to health data, particularly for researchers and smaller research institutions. The issue is perhaps best exemplified by the lack of access to valuable Covid-19 databases maintained by the Indian Council for Medical Research, including the government’s own scientists. Arguably, such access would have enabled real-time data analysis and boosted our health systems’ responsiveness to the pandemic.

Also Read: Doctors aren’t using health apps that track the data of millions of people

Free availability

In principle, health data collected using public funds should be made freely available. The government has in fact taken steps in this direction by introducing the National Data Sharing and Accessibility Policy (NDSAP) in 2012, followed by a platform for Open Government Data. However, there is a need to revamp both the policy and the open data sets made available on the platform, many of which also suffer from the issues of data quality, completeness, and accuracy described above. Organisations are also increasingly becoming cautious about sharing their health data, whether motivated by privacy and economic concerns. This would also need to be appropriately addressed.

Globally, there is a focus on developing digitally-enabled health systems that constantly learn and improve based on real-time data, and enable the right analysis and inputs to inform policy and praxis. The NDHM and related policies recognise the use of health data for research as a key benefit of the mission. This must now be followed by expanding the current focus to the deployment of health data for research purposes and instituting necessary and granular policies that also address issues in the ecosystem including those of quality, completeness, accuracy, and access to health data. It is imperative to not only bolster medical research and innovation, but also the preparedness of our health systems to combat future public health crises.

This article is part of a series examining the relationship between the global and the local, in partnership with Carnegie India, leading up to its Global Technology Summit 2021 (14th-16th December 2021). Click here to register.

Priyadarshini D. is an associate fellow at Carnegie India. Arjun Kang Joseph is a research analyst and strategic development coordinator at Carnegie India. Views are personal.

(Edited by Srinjoy Dey)

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