From UPSC perspective, the following things are important :
Prelims level: National Digital Health Mission
Mains level: Paper 2- Issues to consider in digitising health infrastructure
As India seeks to create digital health infrastructure, it must consider several issues.
Integrated digital health infrastructure
- The National Digital Health Mission aims to develop the backbone needed for the integrated digital health infrastructure of India.
- This can help not only with diagnostics and management of health episodes, but also with broader public health monitoring, socio-economic studies, epidemiology, research, prioritising resource allocation and policy interventions.
- However, before we start designing databases and APIs and drafting laws, we must be mindful of certain considerations for design choices and policies to achieve the desired social objectives.
Factors to be considered
1) Carefully developing pathway to public good
- There must be a careful examination of how exactly digitisation may facilitate better diagnosis and management, and an understanding of the data structures required for effective epidemiology.
- We must articulate how we may use digitisation and data to understand and alleviate health problems such as malnutrition and child stunting.
- We need the precise data we require to better understand crucial maternal- and childcare-related problems.
2) Balancing between public good and individual rights
- The potential tensions between public good and individual rights must be examined, as must the suitable ways to navigate them.
- Moreover, for the balancing to be sound and for determining the level of due diligence required, it is imperative to clearly define the operational standards for privacy management.
- Conflating privacy with security, as is typical in careless approaches, will invariably lead to problematic solutions.
- In fact, most attempts at building health data infrastructures worldwide — including in the UK, Sweden, Australia, the US and several other countries — have led to serious privacy-related controversies and have not yet been completely successful.
3) Managing the sector specific identities
- Even if we define and use a sector-specific identity, the question of when and how to link it with that of other sectors remains.
- For example, with banking or insurance for financial transactions, or with welfare and education for transactions and analytics.
- Indiscriminate linking may break silos and create a digital panopticon, whereas not linking at all will result in not realising the full powers of data analytics and inference.
4) Working out the operational requirement of data infrastructure
- We need to work out the operational requirements of the data infrastructure in ways that are informed by, and consonant with, the previous points.
- In other words, the design of the operationalisation elements must follow the deliberations on above points, and not run ahead of them.
- This requires identifying the diverse data sources and their complexity — which may include immunisation records, birth and death records, informal health care workers, dispensaries etc.
- It also requires an understanding of their frequency of generation, error models, access rights, interoperability, sharing and other operational requirements.
- There also are the complex issues of research and non-profit uses of data, and of data economics for private sector medical research.
5) Issue of due process
- Finally, “due process” has always been a weak point in India, particularly for technological interventions.
- Building an effective system that can engender people’s trust not only requires managing the floor of the Parliament and passing a just and proportional law, but also building a transparent process of design and refinement through openness and public consultations.
- In particular, technologists and technocrats should take care to not define “public good” as what they can conveniently deliver, and instead understand what is actually required.
- While we can understand the urge to move forward quickly, given the urgent need to improve health outcomes in the country, deliberate care is needed.
Consider the question “While seeking to develop digital health infrastructure through the National Digital Health Mission, we should be mindful of certain considerations for design choices and policies to achieve the desired social objectives. Comment.”
Conclusion
Developing a comprehensive understanding of the considerations related to health data infrastructure may also inform the general concerns of e-governance and administrative digitisation in India, which have not been all smooth sailing.
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