draft-ndhm-policy-experts-warn-of-structural-problems-lack-of-clarity-on-patient-control-over-data

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Context: The government’s existing draft to manage patient health data under the National Digital Health Mission (NDHM) has problems that may make it difficult for patients volunteering for digital health IDs to have full control or visibility over how their data is used, according to experts.

Background:

  • The draft for Health Data Management Policy of the National Digital Health Mission (NDHM), which aims to look at data safety measures as part of India’s attempt to digitise its healthcare system, has been put in the public domain for feedback.
  • The objective of this draft policy is to The draft policy mainly seeks to set out a framework for “secure processing of personal and sensitive personal data of individuals” who are a part of the national digital health ecosystem.
  • Salient features of the draft policy:
    • As per the draft proposal, everyone enrolled for the mission will get a Health ID free of cost and will have complete control over his or her data.
    • Any personal data can be collected only on consent from individuals and they will be allowed to revoke their consent to restrict any sharing of personal data. 
    • The National Health Authority (NHA), the central agency responsible for the implementation of Ayushman Bharat Pradhan Mantri Jan Arogya Yojana, has been mandated to design and roll out NDHM in the country.
    • Data collected across the National Digital Health Ecosystem (NDHE) will be stored in at the central level, the state or Union Territory level and at the health facility level, by adopting the principle of minimality at each point.
    • The provisions of this policy shall apply to the entities involved in the NDHM and those who are a part of the NDHE, healthcare professionals, governing bodies of the health ministry, the NHA, relevant professional bodies and regulators.

National Digital Health Mission 

  • Its roots lie in a 2018 Niti Aayog proposal to create a centralised mechanism to uniquely identify every participating user in the National Health Stack.
  • The National Digital Health Mission is a digital health ecosystem under which every Indian citizen will now have unique health IDs, digitised health records with identifiers for doctors and health facilities. 
  • The National Digital Health Mission (NDHM), which comes under the Ayushman Bharat Pradhan Mantri Jan Arogya Yojana (AB PM-JAY), is expected to improve the efficiency, effectiveness, and transparency of health services in the country

What is a Health ID?

  • As per the National Health Authority (NHA), every patient who wishes to have their health records available digitally must start by creating a unique Health ID.
  • The health ID will contain information about medical data, prescriptions and diagnostic reports, and summaries of previous discharge from hospitals for ailments.
  • Participation in NDHM is not compulsory.
  • Each Health ID will be linked to a health data consent manager — such as National Digital Health Mission (NDHM) — which will be used to seek the patient’s consent and allow for seamless flow of health information from the Personal Health Records module.
  • This ID is to be created by using a person’s basic details and mobile number or Aadhaar number.
  • The ID will be applicable across states, hospitals, diagnostic laboratories, and pharmacies.

Current digital system in health sector

  • Many States have already connected the National Rural Health Mission (NRHM) and National Health Mission through the IT network connected to most public health centres even in tribal areas. 
  • All larger health facilities generate and store computerised patient data also for planning treatment, procurement of medicines and consumables.
  • The cards created under the Rashtriya Swasthya Bima Yojana and the Ayushman Bharat Pradhan Mantri Jan Arogya Yojana are used for pan-India portability or for determining insurance cover.

Benefits of NDHM

  • Ease of living: It ‘would help patients save the burden of carrying medical reports to a specialist or other hospitals’. One can also avail Telemedicine support from renowned specialists if required . 
  • Respects privacy: Only anonymised data will be shared upwards, and your consent will be taken every time for sharing any personal identifiable information.
  • Homogenised software: The scheme also intends to replace existing data generation systems with a new homogenised software for all machines in the health sector in the country with a central processor that will extract the relevant data from individual records. 

Structural issues with the mission:

  • Cooperative federalism: Health is under the State-list subject. Not only can it not bind the state, it also isn’t binding on the National Health Authority (NHA) that is enforcing it.
  • There is no remedy mechanism and enforcement structure to prevent the law enforcement agencies from accessing patients’ data.
  • Right to be forgotten: The policy allows the patient to only request that their data be erased if they’re withdrawing their consent, but this request can also be denied. 
  • Data privacy: People easily give consent in normal times let alone in a time of medical emergency. It is quite difficult to secure the transferable data of many millions getting stored in the decentralised system.
  • The definition of a consent manager is also not clear enough in the current policy to understand whether the role will be played by a private firm, NGO or government body, according to her. 
  • Intra state difficulties
    • Most patients avail medical services from doctors or health-care centres in their own State. 
    • But when they seek advanced care in other States or migrate to another State they face difficulties because data is not available.
  • Costs of software change
    • Public health professionals estimate the cost in thousands of crores for all government and private HIPs to upgrade their hardware and connectivity systems, training of present staff, the entry of data afresh apart from other indirect costs.
    • The Integrated Disease Surveillance Programme and the Health Management Information System (IDSP-HMIS) will have to be upgraded.
  • Rural disconnect: 
    • In rural areas it is not a feasible option for medical practitioners to enter data in computers on their own or engage data entry operators merely to comply with the digitisation protocols.
  • Misplaced priorities: Digitisation is not the immediate problem facing the health sector. The following issues deserve immediate attention: 

  • Unreliable health-care facilities in both the government and private sectors, 

  • Difficulties in getting timely care, 
  • Availability of beds and hygienically maintained hospital premises, 
  • Availability of doctors physically or on line, and the 
  • Continuous neglect of preventive and community health initiatives. 

Overall, the scheme appears to promise an end-to-end, hands-free Digital experience. But data is not the only cure, for all our ills. Our health infrastructure needs a complete overhaul.

Sources:

https://indianexpress.com/article/business/draft-ndhm-policy-experts-warn-of-structural-problems-lack-of-clarity-on-patient-control-over-data-6594847/

https://www.thehindu.com/opinion/lead/mind-the-gaps-in-indias-health-care-digital-push/article32517477.ece

https://www.firstpost.com/health/narendra-modi-launches-national-digital-health-mission-all-you-need-to-know-about-new-health-id-8718681.html

Image source: TOI

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Q) National Digital Health Mission promises an end-to-end, hands-free Digital experience. Critically analyse. (250 words)