Health Data Management Policy – The Big Picture – RSTV IAS UPSC

Health Data Management Policy

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TOPIC: General Studies 2

• Issues relating to development and management of health
• e-governance- applications, models, successes, limitations, and potential

In News: The Health Ministry approved a policy under the National Digital Health Mission (NDHM) to protect and manage personal data of patients using the digital services of the scheme.

• The government said that this policy is to be read along with, and not in contradiction to, any applicable law, or any instrument having the effect of any law together with the Blueprint, the information security policy, the data retention and archival policy and any other policy, which may be issued for the implementation of the NDHM.
• 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 policy was approved “after over a month” of soliciting feedback from various stakeholders and the public.
• It would also apply to any healthcare provider who collects, stores and transmits health data in electronic form, insurers, charitable institutions, pharmaceuticals and all individuals, teams, entities who collect or process personal or sensitive data of any individual as part of the NDHE.
• The NDHM will significantly improve the efficiency, effectiveness, and transparency of health services in India.

National Digital Health Mission (NDHM)

The policy acts as a guidance document across the National Digital Health Ecosystem (NDHE). 

• One of the main objectives of the draft policy is to provide adequate guidance and to set out a framework for the secure processing of personal and sensitive personal data of individuals who are a part of the national digital health ecosystem. This will be in compliance with all applicable laws and international standards that define the set of frameworks of consent for the collection and processing of health data by healthcare practitioners and other entities and other relevant standards related to data interoperability and data sharing.
• The NDHM envisages creating a national health ID for every Indian, an idea mooted by the NITI Aayog in 2018 when it recommended creating a centralised system to manage healthcare in the country. 
• The NDHM is part of the Centre’s National Digital Health Blueprint, which aims to enhance healthcare delivery by setting up a core e-health database of international standards and, on paper, allowing patients to have control over their health data. 
• With its key building blocks or applications, HealthID, DigiDoctor, Health Facility Registry, Personal Health Records, Telemedicine, and e-Pharmacy, the mission will bring together disparate stakeholders and radically strengthen — and, thus change — India’s healthcare delivery landscape.

The NDHM is supposed to cover all government health programmes to begin with. This will be a huge exercise, akin to the Aadhaar project, and would require more resources than the currently allocated ₹144 crore, making private participation a necessity given the strained finances of the Centre. However, unlike Aadhar, the health ID isn’t mandatory and is only one of the components of the Mission, which the government reckons will go a long way in providing universal health coverage to over 1.3 billion people. 

The core building blocks of the NDHM — the Health ID and Health Facility Registry —shall be owned, operated and maintained by the government. However, private operators will have equal opportunities to integrate with these systems and create products for the market. Such linkages across public and private players could enhance medical efficiency and improve the patient’s experience. Patients can choose the documents they would like to share, with whom and for how long.

Merits of NDHM

• Creates Digital Health Ecosystem: It will reduce the existing gap between various stakeholders such as doctors, hospitals and other healthcare providers by bringing them together and connecting them in an integrated digital health infrastructure.
• Voluntary Scheme: The NDHM is a holistic, voluntary healthcare programme. While option of digital Health ID will be there, in case a person does not want Health ID, then also treatment needs to be provided.
• Data Safeguards: All products by private participants shall be as per official guidelines taking care of security, privacy and standards of the NDHM ecosystem
• Improves Healthcare Service Efficiency: The created Digital Health infrastructure enables users to obtain a longitudinal view of their healthcare records. Electric Medical Records will increase accountability, improves patient outcomes, and advances evidence-based policymaking. 
• Addresses Healthcare Challenges: The Digital Health infrastructure greatly reduces the risk of preventable medical errors and significantly increase quality of care. 
• Reduces Information Asymmetry: The Digital data will empower all Indians with the correct information and sources enabling them to take an informed decision to avail the best possible healthcare.
• Aligned with International Goals: NDHM will be a major stride towards achievement of the United Nations Sustainable Development Goal 3.8 of Universal Health Coverage, including financial risk protection
• Last Mile Connectivity Issue: The provision of promoting e-pharmacy & Telemedicine will enable people in rural areas access quality healthcare providers.
• Data Ownership issues addressed:
  • The health data will reside at individual hospital servers in a federated architecture. 
  • Citizen will own his/ her health data and would require consent to share data.
  • All the basic registries of patients/hospital/medical professionals that enable data sharing will be owned by a government entity.

Challenges Ahead

• Cannot be a Substitution: Digitalisation is welcome but is no substitute for inadequate human resources and infrastructure in the health sector. 
• Doesn’t address core concern of Health care sector: The real issue in India’s health sector is the abject lack of primary health facilities in much of India. 
• Digital awareness about the utility of the scheme is needed for its successful adoption by beneficiaries so that it eases the process and not 
• To enable seamless data exchange, all users (pharmacists, laboratories, radiology clinics, insurers and hospitals) must be incentivised to adopt a standard language of communication
• Prone to digital theft: Considering that the mission involves government collaboration between hospitals in both public as well as private sectors, laboratories, insurance firms, pharmacies and telemedicine, there is a risk of exposing individual healthcare data to hacking and commercial misuse. 
• Voluntary or involuntary: Although the NDHM is now a voluntary exercise, like the Aadhaar was at the outset, it could become mandatory for availing government health services. In such a context, ensuring the safety of individual health data becomes paramount. The government must gain the confidence of all stakeholders, including rights groups, before going ahead. 
• Clarity required: There should be more clarity on questions such as: who will maintain and manage the centralised repository of citizen’s health data; who will own the data — the individual or the state; whether individuals can transfer the data between service providers (which is an opaque and cumbersome exercise in the offline world today) and whether the individual has the right to erase irrelevant healthcare data and maintain ‘his or her right to be forgotten’— an issue that has raked up a controversy in the European Union. 
• Insurance companies should not be allowed to misuse personal data. 
• The NDHM must also be in compliance with the global best practices on data privacy, such as the EU’s General Data Protection Regulation.

Conclusion

Such centralised data, combined with real-time Big Data analytics, can become a surveillance tool. Considering the way healthcare data from wearable devices are getting mainstreamed, with healthcare providers, doctors and patients using them for diagnosis, if not for treatment, the NDHM should spell out its stand on collecting such data from individuals and integrating it with the unique health ID.

The country’s data protection law — in the works for almost three years — will have to factor in such concerns, arm patients with safeguards. In the coming months and years, the government and the country’s legal, IT and medical systems will have to come together to translate the NDHM’s patient-centric vision into reality.

Connecting the Dots:

1. The potential and pitfalls of digitisation of health data
2. How will the National Digital Health Mission change India’s health delivery landscape? Discuss.