Person:

Balsari, Satchit

In its commitment towards Sustainable Development Goals, India envisages comprehensive primary health services as a key pillar in achieving universal health coverage. Embedded in siloed vertical programmes, their lack of interoperability and standardisation limits sustainability and hence their benefits have not been realised yet. We propose an enterprise architecture framework that overcomes these challenges and outline a robust futuristic digital health infrastructure for delivery of efficient and effective comprehensive primary healthcare. Core principles of an enterprise platform architecture covering four platform levers to facilitate seamless service delivery, monitor programmatic performance and facilitate research in the context of primary healthcare are listed. A federated architecture supports the custom needs of states and health programmes through standardisation and decentralisation techniques. Interoperability design principles enable integration between disparate information technology systems to ensure continuum of care across referral pathways. A responsive data architecture meets high volume and quality requirements of data accessibility in compliance with regulatory requirements. Security and privacy by design underscore the importance of building trust through role-based access, strong user authentication mechanisms, robust data management practices and consent. The proposed framework will empower programme managers with a ready reference toolkit for designing, implementing and evaluating primary care platforms for large-scale deployment. In the context of health and wellness centres, building a responsive, resilient and reliable enterprise architecture would be a fundamental path towards strengthening health systems leveraging digital health interventions. An enterprise architecture for primary care is the foundational building block for an efficient national digital health ecosystem. As citizens take ownership of their health, futuristic digital infrastructure at the primary care level will determine the health-seeking behaviour and utilisation trajectory of the nation.

In August 2020, India announced its vision for the National Digital Health Mission (NDHM), a federated national digital health exchange where digitised data generated by healthcare providers will be exported via Application Program Interfaces to the patient’s electronic personal health record. The NDHM architecture is initially expected to be a claims platform for the national health insurance program ‘Ayushman Bharat’ that serves 500 million people. Such large-scale digitisation and mobility of health data will have significant ramifications on care delivery, population health planning, as well as on the rights and privacy of individuals. Traditional mechanisms that seek to protect individual autonomy through patient consent will be inadequate in a digitised ecosystem where processed data can travel near instantaneously across various nodes in the system and be combined, aggregated, or even re-identified.

In this paper we explore the limitations of ‘informed’ consent that is sought either when data are collected or when they are ported across the system. We examine the merits and limitations of proposed alternatives like the fiduciary framework that imposes accountability on those that use the data; privacy by design principles that rely on technological safeguards against abuse; or regulations. Our recommendations combine complementary approaches in light of the evolving jurisprudence in India and provide a generalisable framework for health data exchange that balances individual rights with advances in data science.