This case study was developed to highlight health data governance success stories and illustrate how the Health Data Governance Principles can be applied in a national context. This information was compiled by PATH through desk research and conversations with local health care data and program implementation experts. It applies past, current, and existing policies, frameworks, and activities in India against the following three Health Data Governance Principles1:
The national government is driving the digitalization of health systems in India, and health data governance gained importance in 2015 when health was added as a critical component of the government’s vision of a “Digital India.” This vision turned into action when the National Digital Health Mission, now known as the Ayushman Bharat Digital Mission (ABDM), was established in 2020 with a singular goal of providing integrated digital health infrastructure across the country.
The development of successive evidence-based policy frameworks has furthered the development of a robust governance structure, including:
These frameworks laid the groundwork for efficient and integrated infrastructural building blocks, including registries, management systems, and platforms, all developed to address on-the-ground public health realities.
Health data governance mechanisms are currently managed at the state level with data.gov.in serving as a national nucleus to support open data for the Government of India. This platform allows single-point access to datasets, documents, services, tools, and applications published by ministries, departments, and other government organizations.
It is in this context of policymaking, efficient service provision, and responsiveness to public health needs that India’s health governance trajectory is situated2, 3.
The ABDM sandbox is a platform for innovators to test their technologies and products in a contained ABDM-compliant environment. The sandbox is being used to assess platform integration and consumer and market reactions to new tools and approaches prior to their implementation with larger audiences. As of February 2022, 745 entities had signed up to use the sandbox, with 17 already rolling out products that are integrated and compatible with ABDM. These include the following, Practo, a video consultation application; Doxper, a set of health care data digitization tools; and a health management information system for Apollo Hospitals4, 5.
Data sharing and interoperability within health programs are also promoted in ABDM through a number of core building blocks that have incentivized and driven an increasing “datafication of health” in India,6 including:
As part of an effort to link health programs across geographies and disease areas to an interoperable database, the government is also implementing the two-pronged eSanjeevani platform. One part of the platform, eSanjeevaniAB-HWC, connects doctors to other doctors to strengthen referral mechanisms and enhance provision of specialized health services in rural areas and isolated communities. The other part, eSanjeevaniOPD, focuses on a doctor-patient telemedicine system, enabling citizens to obtain outpatient services in their homes.
The eSanjeevani platform not only improves equity by connecting hard-to-reach communities but also fosters communication between health facilities and health personnel across districts and states, thus improving decision-making and operations. As of January 2022, eSanjeevaniAB-HWC has reported around 16 million consultations, and over 6.5 million patients have received health services through eSanjeevaniOPD7.
Policies, including the National Health Policy (2017), have also improved health data pipeline efficiencies, and regulation such as the Data Empowerment and Protection Architecture plan are prioritizing data privacy and security.
“We can draw some parallels from the financial services sector. They were very clear on interoperability data sharing and standards-based systems thinking. Healthcare needs to move in the same direction.” -- Rahul Mullick, Senior Vice President of Technology, Resolve to Save Lives
Consent is one of the key areas of focus of the ABDM, especially as related to data collection and data use, and its importance is reflected in the creation of “the consent manager” as a separate building block that supports the management and preferences of users within the ABDM interface.8,9 The National Health Authority also has supported the creation of a unique health identification number through which citizens can store, access, and share their health data. The health identification number can be linked to an individual’s government identification number, known as Aadhaar, or to the individual’s mobile number. While the health identification number ensures personal data security and consensual sharing of health records with health professionals, the ABDM consent manager enables the secure exchange of this information.
The Digital Information Security in Healthcare Act (2018), Personal Data Protection Bill (2019), and Health Data Management policy (2020) are three strong attempts at proactive data governance legislation that have been driven by the national government in recent years. The ABDM personal health record application and the consent-based data sharing protocol are also seen as tools that empower the patient with control over their own data.
Special thanks to the following individuals for informing this case study:
Health Data Governance Principles Case Study: India. Fondation Botnar; 2022.
1.Health Data Governance Principles. Foundation Botnar. 2022.
2.Governance & Leadership. PHCPI. https://improvingphc.org/improvement-strategies/governance-leadership. Published January 15, 2021. Accessed [March 04, 2021].
3.Brinkerhoff D, Bossert T. Health Governance: Concepts, Experience, and Programming Operations, Policy Brief. Washington DC: USIAD 2008. https://www.hfgproject.org/health-governance-concepts-experience-programming-options/.
4.27 healthcare and health tech service providers integrated with Ayushman Bharat Digital Mission: Private and government HMIS, LMIS, health lockers, health tech organizations and other digital services by Central and State Governments are integrating with ABDM infrastructure to build digital health ecosystem of India [press release]. New Delhi: Press Information Bureau (PIB) Delhi; February 8, 2022. https://pib.gov.in/PressReleasePage.aspx?PRID=1796553.
5.National Health Authority Ayushman Bharat Digital Mission (ABDM) website. Our partners page. https://abdm.gov.in/home/partners. Accessed [March 18, 2022].
6.Ruckenstein M, Schüll ND. The datafication of health. Annual Review of Anthropology. 2017;46:261–278. http://dx.doi.org/10.1146/annurev-anthro-102116-041244.
7.Dr. Mansukh Mandaviya reviews working of eSanjeevani teleconsultation facility at CGHS Hqrs; interacts with beneficiaries, doctors and officials across the country [press release]. New Delhi: Press Information Bureau (PIB) Delhi; January 14, 2022. https://pib.gov.in/PressReleasePage.aspx?PRID=1789963.
8.Narayanan K. Digital Health in India. New Delhi / Bangalore: Federation of Indian Chambers of Commerce and Industry (FICCI) / Itihaasa Research and Digital; 2021. https://itihaasa.com/public/pdf/Digital_Health_in_India.pdf.
9.Nishith Desai Associates. Digital Health in India. Mumbai: Nishith Desai Associates; 2022. https://www.nishithdesai.com/fileadmin/user_upload/pdfs/Research_Papers/Digital_Health_in_India.pdf.