By Dr Sambit Dash*
The National Digital Health Mission (NDHM), launched early this week envisages allotment of a unique 14-digit health ID to all Indians which will contain all electronic medical records (EMR) of an individual. While there are various advantages of having an EMR, to realize its full potential it is imperative that, among others, there is no hasty and coercive implementation of the program, that there is adequate addressing of consent, privacy and data security issues and that the basic infrastructural requirements are met. Of great importance is to have the enabling infrastructure that facilitates use of digital health ID, a lack of which could be detrimental in providing health services. Equally and often neglected aspect of consent needs to be addressed in the NDHM, not just in letter but in spirit as well.
The Structure & infrastructure
The NDHM is part of the ABDM or Ayushman Bharat Digital Mission which “aims to develop the backbone necessary to support the integrated digital health infrastructure of the country”. The building blocks of ABDM has four components – the UHID or universal health ID, healthcare Professionals Registry (HPR), Health Facility Registry (HFR) and PHR or Personal Health Record-System. The ABDM is the mission mode initiative of National Digital Health Blueprint (NDHB) which in turn is the implementation framework of National Health Stack which further was the digital technology adoption suggestion of the National Health Policy (NHP), 2017.
The objectives of ABDM spans from establishing “state-of-art digital health systems” to adopting “best principles of cooperative federalism” to “enhancing the efficiency and effectiveness of governance at all levels”. While the objectives are massively broad, the delineation of intended purpose, the use cases, limitations for those who opt out, etc are still unclear.
While the digital health initiatives have the potential to better healthcare services in certain areas, the fact remains that basic infrastructure gaps needs to be filled to realize that potential. As per the Rural Health Statistics 2018, nearly 40,000 health units, comprising both PHCs and sub centers did not have electricity supply. This also indicates that there are many more health centers without internet or stable internet connections. How would the EMR be accessed in such places is anyone’s guess.
As per Telecom Regulatory Authority of India (TRAI), as of September 2019 internet subscriptions reached 52.08 per 100 population. Internet penetration (population that has access to internet) amounted to a modest 36% of the overall population as of December 2019. The demographics is further skewed against women and marginalized sections of the society. Thus getting to see one’s own details, reading consent forms, providing approvals would be a pipedream for large number of people, only pointing to the fact that it will be dependent on a CHW or a ‘contractor’ of sorts.
While the above numbers are on an improvement path, the pandemic has served a body blow to many such progresses and it is thus important to tread slowly on the digital health ID path. It is extremely essential that it be truly voluntary in nature, unlike the case of Aadhaar where requirements of the ID in critical places makes it unavoidable. Ration denial to the poor and marginalized owing to failed linking, fingerprint scanning issues have been a cause of huge concern but a similar situation if it were to arise in denial of healthcare services due to glitches in the health ID would be catastrophic.
One of the biggest concerns will that be of consent, an issue which is often not paid much attention to. Given the information asymmetry and power equation between healthcare workers, particularly the doctor and patient, consent ranges from being absent, verbally taken, obtained on paper while not understanding the fine print and in various such permutations and combinations. In letter, the NDHM makes participation voluntary, requires privacy notices to be clear and concise but finally requires a plethora of information that needs to be furnished while providing or declining consent.
While a virtue is being made of the fact that the entire medical history of a person will be available to the treating doctor, questions about which set of information an individual wishes not to part with remains. What if a person visiting an orthopedician for knee pain does not wish for him to know about her miscarriage ten years back; or a person visiting a family physician for common cold wishes to withhold his psychological counseling data?
In rural and semi-urban setups where it is well known that community health workers (CHWs) collect a large amount of health related data and the concept of consent there is largely non-existent. Would then consolidating all health data of people that do not have agency and centrally placing it happen without explicit consent being obtained or by paying lip service to it?
Consent in healthcare in India is not focused on since healthcare decision making follows a ‘paternalistic model’, exacerbated by the power equation, where the patient is largely excluded from active participation. Currently, usually, any doctor, any health administrator in a hospital, irrespective of whether they are directly concerned with the patient can pull up the health records. Broad based consent taken during hospital admissions permit the patient data to be used for, say, publishing research papers, etc, and such cases can be expected to rise if left unaddressed.
There are several issues that the NDHM needs to address before it can be safely rolled out. Rethink on various aspects be it the issue of centralization, building more checks and balances, using technology to disaggregate information and much more should be done using channels of constant feedback and consultation.
*Dr Sambit Dash works as an Assistant Professor (Selection Grade) at Department of Biochemistry Melaka Manipal Medical College (Manipal Campus).
DISCLAIMER: The views expressed in the article are solely those of the author and do not in any way represent the views of Sambad English.