The National Digital Health Mission (NDHM) announced by the PM on the 74th Independence Day has the potential to transform the healthcare sector, making it more technologically advanced, inclusive and delivery-driven.
Digitizing Healthcare: A Backgrounder
- The National Health Policy 2017 had envisaged creation of a digital health technology eco-system aiming at developing an integrated health information system.
- A Digital Health ID was proposed to reduce the risk of preventable medical errors and significantly increase the quality of care.
- In the context of this, the NITI Aayog, in June 2018, floated a consultation of a digital backbone for India’s health system — National Health Stack (NHS).
- A committee headed by former Unique Identification Authority of India (UIDAI) chairman released the National Digital Health Blueprint (NDHB) in July 2019.
- It recognised the need to establish a specialised ecosystem, called the National Digital Health Mission (NDHM) which finally landed on the tarmac on this Independence Day.
The National Digital Health Mission
- The NDHM is a digital health ecosystem under which every Indian citizen will now have unique health IDs, digitized health records with identifiers for doctors and health facilities.
- The mission will significantly improve the efficiency, effectiveness, and transparency of health service delivery and will be a major step towards the achievement of the UN Sustainable Development Goal 3.8 of Universal Health Coverage, including financial risk protection.
Components of the mission
The suite of digital systems consists of Health ID, DigiDoctor, Health Facility Registry (HFR), Personal Health Records, e-Pharmacy, and Telemedicine.
The mission envisages the creation of these core digital systems which are built to support timely access to safe, affordable healthcare for all citizens and will accelerate the country’s progress towards Universal Health Coverage (UHC).
The mission has unique features which make it very attractive for all the stakeholders to be part of the system, some of which are as follows:
(1) Prioritizing patients
- Say, mortality from Covid-19 is significantly increased by comorbidities or the presence of other underlying conditions like hypertension or diabetes.
- With digital health records, doctors can prioritise patients based on their test results.
(2) Portability of health records
- Portability of records fairly eases in a patient with the first hospital visit, or her/his most frequently visited hospital.
- If she/he wishes to change a healthcare provider for cost or quality reasons, she can access her health records without carrying pieces of paper — prescriptions and test reports.
- People will 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.
(3) Easy facilitation
- This initiative will allow patients to access healthcare facilities remotely through e-pharmacies, online appointments, teleconsultation, and other health benefits.
- Besides, as all the medical history of the patient is recorded in the Health ID card, it will help the doctor to understand the case better, and improved medication can be offered.
- It is non-prescriptive — unlike its predecessor from a few years ago, it steers away from designing a monolithic EMR (an electronic medical record) and instead only provides data facilitation exchange between patients, providers and payers.
(4) Technology impetus in policymaking
- Meanwhile, it is also not just individuals who could emerge beneficiaries of the scheme.
- With large swathes of data being made available, the government too can form policies based on geographical, demographical, and risk-factor based monitoring of health.
The imminent adoption of NDHM in the absence of a data protection law has led for the policymakers to plan for two policies — security of health systems, and privacy of personal health records.
With the unavailability of information security laws related to healthcare in India, the following could be the repercussions or could lead to violation of the mandatory requirements:
(1) High Probability of Data Breach:
The data breach occurs when any person or corporate generates, collects, stores, transmits or discloses digital health information in contravention to the provisions or standards laid down.
(2) Data Ownership and Standardization Issues:
An owner shall have the right to give/refuse or withdraw consent for the storage and transmission of digital health data. In terms of standardization, it is very important to transform the data before loading it to the target system.
(3) Data Normalization Issues:
Data Normalization is done to reduce data redundancy and improve data integrity. In view of the unavailability of such laws, it could bring redundancy as data could exist in multiple forms.
(4) Data Collection, Storage and Transmission Challenges:
The purpose of data generation, collection, storage and transmission is to facilitate health and clinical research and health care quality. But the unavailability of data protection and information security laws (for maintaining CIA- confidentiality, Integrity and Availability) could lead to the collection of data without informing the owner, lack of privacy controls while storing in the cloud and transmitting the data without the consent of the owner.
(5) Illegal data selling and theft: Unavailability of appropriate laws could lead to incidents where digital health data is acquired or accessed without proper authorization. For example, monetizing the patient data for the purpose of research and innovation may also be misused by its illegal selling without the knowledge of the patient, thereby, leaking his sensitive data amounting to the violation of data privacy.
(6) Data Quality Issues- There could be the following data quality issues that can be encountered without the proper laws in place:
- Duplicated data: Repeated data making it difficult to uniquely identify the record;
- Inconsistent data formats: Storing the same data in multiple tables from different data sources;
- Inaccurate data: Either the data is obsolete or has errors in it;
- Excessive data: Unusable data could be a waste of storage and cost;
- Poorly Defined data: Causes misunderstanding around the proper methodology for data management.
India has not yet enacted specific and full-fledged legislation on data protection. Of course, the Parliament of India had amended the Information Technology Act (2000) (“IT Act”) to include specific section 43A, but it only includes corporates and not individuals regarding compensation for failure to protect data.
Other inherent issues
- A fragmented private healthcare market consisting of single-doctor clinics, nursing homes, non-profits and corporate hospitals have varying adoption rates of digitization.
- Corporate hospitals like Max, Apollo, Fortis, etc. have voluntarily adopted electronic health records standards notified by the government.
- However, it is not possible for a patient to digitally transfer their health records from one type of hospital or a healthcare provider to another.
- Critical to that is also the role of doctors, who will play a significant role in maintaining electronic digital data.
- The growth path is powered by clinicians and we haven’t really been successful in filling the void.
- India currently has 0.8 doctors per 1,000 patients, in comparison to over 2 per 1,000 in China and 2.6 in the US. The WHO recommends 1 doctor to 1,000 patients.
Making it happen
Many countries are lightyears ahead of India in their use of digital health records, but none has anchored its vision as robustly around the public health records, as has the current iteration of the NDHM.
Making it a success will have to fill the voids discuss above.
To enable seamless data exchange, all users must be incentivized or mandated to adopt a standard language of communication. The spiraling burden for documentation had led to absurd situations. It is imperative that India, while embracing global standards, seriously rethinks what to document, when, why, and most importantly, by whom.
There is no doubt that NDHM launched will significantly improve the efficiency, effectiveness, and transparency of health services delivery including building a paperless system and will facilitate online consultation with the doctors. But data protection and privacy are the keys to the success of this mission.
The usual conclusion rests with a generic statement-
“These tectonic shifts won’t all happen all of sudden. 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.”