The fundamental unit of digital healthcare is the electronic health record or the EHR
Ayushman Bharat is going to cover 500 million people, making it the world’s largest public health insurance programme. However, it will only be successful if the Indian government uses technology in every aspect of the project—to scale the provision of health services, monitor treatment and ensure accountability.
This is not an insignificant challenge as even the most advanced nations around the world have struggled with the digitisation of the medical sector. One of the primary challenges has been to effectively coordinate data generated by the various stakeholders in the healthcare ecosystem.
The fundamental unit of digital healthcare is the electronic health record or the EHR. In a fully digital health system, every entity that a patient comes in contact with during the life cycle of her diagnosis and treatment—the physician, the hospital into which she is admitted, the diagnostic clinic that processes her tests, the insurance company, etc—will each generate EHRs pertaining to the same patient. If all these EHRs are optimally coordinated they can be efficiently used across the ecosystem. If, on the other hand, health data access is restricted, it can have significant deleterious effects on treatment and the cost of healthcare.
The trouble is that around the world, the process of digitization of the healthcare ecosystem took place haphazardly. Each stakeholder adopted its own digital systems with little reference to others in the ecosystem. As a result, in most Western countries, each entity in the ecosystem generates its own form of EHR that is stored on closed and proprietary data platforms that make it hard to share information with other stakeholders.
India faces an additional challenge. The vast majority of healthcare interventions in India take place non-digitally. Even though close to 70% of healthcare in India is delivered through the private sector, with the exception of a few large private hospital chains and major diagnostic laboratory franchises, the digitization of the systems in most of these facilities is rudimentary at best. In the primary healthcare centres that serve the vast majority of our rural hinterland, data is often logged on paper or at best in Excel, making their value as a digital asset questionable.
As bleak as this might sound, the lack of widespread digitization is, in fact, a tremendous opportunity that we would do well to grasp. Unlike in the West, where uncoordinated digitization has resulted in fragmentation because the data resides in impenetrable silos, India has the opportunity to create a framework that can greatly facilitate cross-platform medical data exchange.
A fundamental requirement of such a system is the common taxonomy that each of the platforms in the medical ecosystem can follow. By adopting the Systemised Nomenclature of Medicine (SNOMED) classification for use in the Indian ecosystem, the Indian government seems to be moving in the right direction. As more software platforms conform to this taxonomy, the exchange of data between these systems will doubtless improve.
However, there are still several structural questions that remain to be addressed. In the first place it is important to confirm, in line with the recommendations of the Justice Srikrishna Committee, that the rights with respect to the medical data generated by these various stakeholders will vest with the patient as the data principal. As it currently stands, hospitals and laboratories often assume proprietary authority over medical data generated using their facilities that makes it hard for patients to retrieve their own records. The national digital health system needs to put the patient first, allowing her to access all EHRs that pertain to her condition regardless of where in the ecosystem they might reside.
Given the disaggregated nature of health data, it would be technically infeasible to create a single central repository of health records for each of the 1.2 billion people in this country. Instead, we should create a digital framework for the interchange of health data, and ensure that the decision to transfer data across the network is made exclusively by the patient. This system should take into account modern technologies like wearable devices that have, in the past few years, moved beyond being merely recreational to providing clinical grade data. Since these devices continuously monitor our personal health parameters, the quality of data they generate is likely to be far more useful than that collected during a single outpatient visit.
Central to this framework is the issue of personal privacy. Much of the data we have been talking about is sensitive and it is critical that the government should keep the principles of personal privacy in mind while designing it.
For instance, the framework of health application programming interfaces through which these various systems will interact with each other in order to transfer data from one part of the ecosystem to another must fully implement principles of purpose limitation and data minimization to ensure that only data which is necessary in order to achieve a clearly stated purpose is capable of being accessed. More importantly, the entire system should be designed such that, by default, access to a patient’s health record is not possible without the consent of the patient provided digitally.
If implemented with care and foresight, this could well become the most advanced healthcare system in the world.
Rahul Matthan is a partner at Trilegal and author of Privacy 3.0: Unlocking Our Data Drive Future. Ex Machina is a column on technology, law and everything in between. His Twitter handle is @matthan.