Representative photo: Irwan iwe/Unsplash
- The mission document of the new ‘Ayushman Bharat Digital Mission’ contains misleading, even disingenuous, statements that make it hard to trust.
- One beneficiary of this mission is likely to be the private healthcare sector, since the mission document specifies that care providers are free to fix the prices for their services.
- That the ABDM doesn’t even mention the scale of the COVID-19 crisis indicates that the government will see only what it wants to see, even if it isn’t really there.
The Ayushman Bharat Digital Mission (ABDM) is the next new goody that our magician-like Prime Minister Narendra Modi has pulled out of his akshaya patra. Those who have struggled for years to keep a cumbersome health system afloat will now have to negotiate this deliberately misleading, even disingenuous, jargon-laden initiative, that has a sinister undercurrent that heralds the exclusion of many people.
The components of the ABMD include a health ID, a ‘Healthcare Professionals Registry’, a ‘Health Facility Registry’ and ‘Personal Health Records’.
The part of the mission regarding health IDs states:
“It is important to standardise the process of identification of an individual across healthcare providers. This is the only way to ensure that the created medical records are issued to the correct individual or accessed by Health Information User through appropriate consent. In order to issue the UHID, the system must collect certain basic details including demographic and location, family/relationship, and contact details. Ability to update contact information easily is the key. The Health ID will be used for the purposes of uniquely identifying persons, authenticating them, and threading their health records (only with the informed consent of the patient) across multiple systems and stakeholders.”
In Indian healthcare, consent has seldom been anything more than a red herring, and the frequent use of this term seems to be geared more towards giving the yeasayers something to throw against the naysayers: “But look, it says ‘informed consent’!” Remove it, and the document reads more like a surveillance manual, which isn’t surprising given the habits of the current regime (remember the Pegasus Papers). Even clinical trials, such as the PATH trial for human papilloma virus (HPV) vaccine, have been fraught with ethical pitfalls around consent.
Perfect informed consent in India has mostly been a wishful dream. The healthcare system, with its typically overbearing and constantly busy doctors, has not found ways to make consent meaningful. Against this backdrop, to expect that the system will suddenly develop the ability to obtain consent is patently fallacious. Patients have often been coerced, fooled into, lured (often through false promises and promises of personal gain) to create the illusion of consent. How are the ethics of healthcare providers suddenly going to improve with the advent of digitalisation?
It is also alarming that the digital health mission envisages an automated consent manager, instead of a human one. What does it say about the government when it speeds through issues as if they are not of real concern?
Next, the Healthcare Provider Repository is envisaged as “a comprehensive repository of all healthcare professionals involved in delivery of healthcare services across both modern and traditional systems of medicine”. And the Health Facility Registry is “a comprehensive repository of health facilities of the nation across different systems of medicine which includes both public and private health facilities including hospitals, clinics, diagnostic laboratories and imaging centers, pharmacies, etc.”
While sounding innocuous, these components of the ABDM raise many questions. How will the patient be given choices? Will the choices be based on clever algorithms or on what a patient really needs? Will public hospitals figure on top of the list of ‘suggested choices’ or will corporate hospitals? Given this government’s penchant for ‘traditional systems of medicine’, will Patanjali products be a first choice or last? And if Google can effortlessly triangulate data about the kind of deodorant it thinks you should be buying, what’s stopping the mission from pushing some not so welfarist choices?
The fourth component of the ABMD is the Personal Health Record (PHR) – an “electronic record of health-related information on an individual that conforms to nationally recognised interoperability standards and that can be drawn from multiple sources while being managed, shared, and controlled by the individual”.
Now, what are these ‘nationally recognised interoperability standards”? And how does the individual become the manager, sharer and controller of this data, which can be ‘drawn from multiple sources’?
The ABMD also has an assorted list of objectives. One of them aims to “establish registries at appropriate level to create a single source of truth in respect of clinical establishments, healthcare professionals, health workers, drugs and pharmacies,” while another will “enforce adoption of open standards by all national digital health stakeholders”. We don’t know what ‘single source of truth’ even means, nor how the promise of ‘consent’ at all levels is located in the context of this enforcement.
Another objective is to create a “system of personal health records” based on “international standards”. These standards are not specified, not even in an appendix. Unraveling each of these objectives exposes either malicious intent or subterfuge. Perhaps, then, the ABDM isn’t even about health or healthcare.
The ‘strong platform’ envisaged for establishing the “building blocks of ABDM” is Aadhaar plus the “wide reach of internet and mobile phones”. Does this mean all rural and remote areas will now receive state-of-the-art internet facilities, and will Kashmir finally be able to resume its internet services?
The government has quite simply jumped over the numerous exclusions that the Aadhaar system created, including, ironically, often leaving out the most vulnerable sections of the population from its coverage. When the government then acts as if these problems don’t exist, trust in the government is bound to take the backseat.
(Aside: In a June 2021 working paper, the Internet Freedom Foundation and the Centre for Health Equity, Law and Policy raised concerns about how a call for a public consultation on the draft ‘Health Data Management Policy’, during the COVID-19 pandemic, excluded non-English speakers, people with disabilities and those without internet access. They highlighted concerns about the lack of data protection laws and that, although the process appears voluntary on paper, hospital administrators and heads of departments have been mandating it.)
In sum, we can’t assume that the ABDM is either evidence-based or voluntary.
One beneficiary of the ABDM is likely to be the private healthcare sector. Hidden in the mission document’s garbled jargon is the following clause: “Health service providers can decide on the price for their health services”.
To be clear: the mission does not mention what the standard treatment protocols should be nor describes an enforceable grievance redressal mechanism, but allows for any healthcare provider or institute to charge as they wish. It is quite likely that private hospitals, especially of the large, corporate variety, are the key drivers of the ABDM, and that the mission will exacerbate the effects of other government policies, such as public-private partnership and health insurance schemes, into precipitating the decline of public healthcare.
Add to these concerns the fact that many doctors in India are already infamous for seeking ‘cuts and commissions’ and for collecting private fees from patients. How can we ensure that they will properly upload the results of tests and other procedures to a database? If public hospital doctors are referring patients out to the private sector, as they commonly do, it is also not likely that they will suddenly develop the morality to disclose all this on the database. On a related note, will patients now be routed ‘automatically’ to case and control groups for clinical trials?
This plethora of issues begs one overarching question: how are technological solutions going to fix India’s more basic issue of low availability of workers in the public healthcare system?
When human and other resources are insufficient, data is not going to become available in any reliable way. The fact that this and other legitimate concerns have largely passed the government by should make us wonder what its real agenda could be. Unlike what devotees of the ruling party believe, we can’t ‘cure’ health systems by flourishing a digital wand. In fact, infusing it with confusion could just be the straw that breaks the back of the public health system, following years of neglect and deliberate under-resourcing.
The need of the hour today is not a revamp of the system but to strengthen existing systems, taking into account gaps that the COVID-19 pandemic and subsequent lockdowns have laid bare. We can’t afford to ignore the daily images of people dying due to lack of access to basic facilities. But that the ABDM doesn’t even mention the scale of the COVID-19 crisis indicates that the government will see only what it wants to see, even if it isn’t really there.
The elderly woman who has a diabetic ulcer and is unable to buy her medicines and who hasn’t received her rations or her pension is the sort of person the government needs to be looking out for. But she may just become another statistic in India’s rush for digital gold.
Yes, digitalisation is an important aspect of making the system more accountable and responsive to people’s needs, but it cannot replace a robust, egalitarian, evidence-based and comprehensive healthcare system altogether.
Dr Sylvia Karpagam is a public health doctor and researcher, part of the Right to Food and Right to Health campaigns.