Digital Health ID Card – Smart Governance or Good Governance?

By- Aditi Maheshwari

The growing dependence on internet of things in various forms such as development of smart cities, robotic functions replacing manpower services, increasing use of drone for security, delivery of medicines and food, photography or video capturing, etc. highlights the influence of technological advancements in the current societal framework. Government functions are naturally falling in the sphere of technological influence which can’t be criticised completely but in certain aspects this requires serious reflection. Will digital governance for health be a transformative move in improving the health ecosystem of India? What are the priority determinants in the health sector? In times of fiscal crisis and shifting demographics, collaboration of public private partnerships to enable improved health infrastructure as well as better diagnostic solutions is no doubt a rewarding venture.

The latest example is the Digital Health ID Card programme under The Ayushman Bharat Digital Mission, which seeks to ease the process of availing medical treatment in any corner of the country along with safeguarding the privacy of the citizens. However, a pilot project is being executed to understand the evidential results for the same.

There are various benefits attached to this digital health id card like storage of complete health records, reduced number of tests, no need to carry physical documents, linkage of Aadhar database to this card for safeguarding identity proof, etc. This is a great example of smart governance allowing for new business models in the delivery of services but is this also a good governance practice is what needs serious reflection.

Making health facilities easily available to the rural and underprivileged people should be our priority more than focusing on providing digital database. Real drivers of change will be when governments focus on providing easy and fast access to the life-saving treatments, to ensure the underprivileged are guaranteed financial protection to meet out expensive treatments, addressing the changing population needs and health inequities, addressing food crisis, etc. especially during the time of pandemic and outbreaks of avian influenza when the governments do not have much bargaining power.

Prima facie this digital health id card facility looks attractive, but this also makes it a lucrative opportunity to attack the privacy of individuals whose data would otherwise have been restricted to a few institutions in the normal course but now their personal data is available nationally as per the data management policy draft. The stored data is not shared with anyone without the persons consent with the participating health providers, but in order to avail the advantage of this digital health ID card such consent is mandatory. Hospitals and governments agencies will be allowed to collect sensitive personal data of patients in the normal course of health ecosystem, i.e., information relating to physical, mental, physiological health, genetic data, etc. Also, other sensitive information like bank account details and payment details will be stored in the database, making it easily prone to cyber-attack.

One cannot also withdraw from the fact that technological and logistical challenges in implementing this scheme is a matter of concern. Ethical management needs to be addressed too, which won’t be an easy task because of the numerous parties involved including cyber security loopholes and hacking attacks. Cyber criminals will naturally feel more tempted, which makes it essential that all responsible precautions to safeguard the privacy of the patient must be ensured. 

Diffusion, democratization and shared value, will result in data fiduciaries scope being broadened, as yoga and wellness centres, local pharmacies will also be a part of this in addition to doctors, hospitals and diagnostic centres. The responsibility of getting consent of people and security of data will be with these institutions. Government will have complete access to this data, along with the liberty to make anonymised or de-identified data in an aggregated form making it available for research and development works. It is important to ensure that the secondary use of health data with appropriate deanonymization of datasets is implemented with ethically centred systems for testing, validating and benchmarking artificial intelligence solutions and big data analyses across various parameters and settings.

It is vital to take care that no compromise in terms of implementing  a strong legal and regulatory framework to protect privacy, confidentiality, integrity and the processing of personal health data, along with measures to deal with cybersecurity, accountability and governance, ethics, equity, capacity building, literacy, trust building, ensuring that good quality data are collected and eventually with proper approval mechanism for the use of same is shared to support planning, commissioning and transformation of services, protection against malign or inappropriate use of information and the penalty for infringements must be executed transparently and in a way the layman can understand.

The user must be made aware in detail regarding the consequences of sharing their private information with various research and development institutions. The range of influence will be exponential covering not just clinical research but also academic research, statistical analysis, archiving, policy formations, research for diagnostic solutions, health reform measures, etc. Competing agendas will exploit use of personal data of individuals for practically anything. Even though individual consent will be taken before sharing their data, yet the fact is that large no. of population is not sufficiently aware about the consequences of permitting the use of their private information by these authorities, making them easy targets for exploitation. All this naturally raises the question whether this is a move of good governance or merely a move to show off smart governance. Think for yourself.