When I transferred a trauma patient from my emergency department in New York, across the sky-bridge, to the adjacent orthopedic hospital, my patient’s recently performed CT scans didn’t travel with him. They were locked in digital silos that didn’t communicate with each other despite the $40-billion plus the US has spent on digitising medical records. And yet, we physicians universally agree that digitising health records is not only a good thing, but a desperately needed intervention because it increases accountability, improves patient outcomes, and advances evidence-based policymaking. Electric Medical Records (EMIs), are, however, one of the key drivers of physician burnout in the US. How will the anticipated August 15 announcement about a personal health record (PHR) for every Indian be different?
To counter these troublesome US trends, in 2017, an interdisciplinary team of physicians, lawyers and computer scientists from the academia, government, and the private and philanthropic sectors published a roadmap for re-imagining India’s health data ecosystem, calling for a federated, API-enabled, PHR — principles that are reflected in NITI Aayog’s National Health Stack Bluebook and the health ministry’s National Digital Health Blueprint. The basic idea is this: Instead of ferrying medical records in polythene bags from doctor to doctor, Indians should be able to access their lab reports, x-rays and prescriptions irrespective of where they were generated, and share them with doctors or family members — with consent. Evolving jurisprudence in India, like the draft Personal Data Protection Bill, called for the portability of personal data in a “structured format”, essentially laying the foundation for Indians to have a right to their data in a manner consistent with 21st-century digital realities. It is one thing to have access to the PDF of your laboratory results — which you already do and can forward to your doctor. But to be able to download and run an app of your choice that trends your results from various labs, and triggers alerts to your doctor would be incredibly helpful. To trust that the app will not sell your data would be a game changer.
Many countries are lightyears ahead of India in their use of EMRs, but none has anchored its vision as robustly around the PHR, as has the current iteration of the National Digital Health Mission (NDHM). There will, however, be concerns.
First, to enable seamless data exchange, all users must be incentivised or mandated to adopt a standard language of communication. Several international standards exist and are promoted in India — however, GPs, pharmacists, laboratories, radiology clinics, insurers and hospitals have to play ball. Insurance claims have typically driven this change elsewhere and this is a strong impetus for the current NHA-MoHFW proposal as well. Unless due attention is paid to the pitfalls of this approach, it will either be less successful than desired or severely compromise the job satisfaction of healthcare providers. A claims-driven documentation system, that also serves as a medico-legal instrument, runs the risk of reducing highly-trained professionals to data-entry operators who must enter billing and legal information, that has little relevance for clinical care. A patient chart for the placement of a simple stitch for a wound requires, for reimbursement, the documentation of the length, depth and width of the suture — how the wound was cleaned, the anesthetic applied, the level of pain control achieved (supposedly a marker of “care quality”), and the number of sutures placed. Only the last piece of information has actual relevance for the next doctor who must know how many stitches to pull out. The spiraling burden for documentation had led to an absurd situation where the Massachusetts General Hospital in Boston hired tele-scribes in India to help physicians transcribe their notes. It is imperative that India, while embracing global standards, seriously rethinks what to document, when, why, and most importantly, by whom. The country must harness advances in voice recognition, natural language processing, and machine learning to ignite its health data ecosystem without straining its over-burdened physicians and community health workers.
Second, the free movement of health data is not without risks — the concerns with universal IDs are particularly salient when it comes to sensitive personal data like health data. Hospital ethics boards and national data privacy laws are only now grappling with difficult questions about third-party use — for instance, if 30-year-old archived X-rays are used to train machine learning algorithms to detect cancer, consent would be required from patients many of whom may be dead. If the algorithm is wildly successful and the hospital’s spin-off startup makes a fortune, do patients get a kickback? How will patients keep tabs on their migrating, morphing data? The answers depend on a variety of factors, including whether the data do, or can, reveal identity, and what the law says.
The proposed NDHM architecture, if executed as intended, has two distinguishing characteristics that may help ameliorate these concerns. The NDHM is non-prescriptive — unlike its predecessor from a few years ago, it steers away from designing a monolithic EMR (electronic medical record) and instead only provides the scaffolding upon which the market can compete to develop a range of applications that would facilitate data exchange between patients, providers and payers. Where hospital administrators have failed, the market may rise to meet clinicians’ needs.
The architecture seeks to protect patients by the rather elegant use of the consent manager framework that has already been successfully used by the Universal Payment Interface. Health information can travel between entities only with requisite permission and with permanent record of the transaction. Distilled down to its essence, all it seeks to do, as described by one of its architects, is to ensure that if A wants X information from B, A is in fact authorised to receive it, and what she is receiving is indeed X.
The potential here for changing how health data are utilised is unlimited. Success is likely to be measured by an acceleration in cashless transactions, better book-keeping, decreased friction in payments — all of which are laudable. For patients and providers, however, success will look different. The portability of clinically-relevant data across private-public divides and states will cut costs and save time, the ability to monitor compliance, say, with responsible use of antibiotics, can profoundly alter practice and improve the quality of care, and the ability to conduct timely institution-based syndromic surveillance may alter the course of an epidemic, and of a nation.
These tectonic shifts won’t all happen on August 15. Or on January 26. Or within the cyclical tenure of bureaucrats or politicians. And they won’t occur in the absence of the long overdue overhaul of healthcare delivery in India. But when they do, they will advance medicine and health for all.
This article first appeared in the print edition on August 14, 2020 under the title ‘A digital push for healthcare’. The writer is assistant professor,emergency medicine, Harvard Medical School and directs the India Digital Health Network at the Lakshmi Mittal South Asia Institute at Harvard.
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