It’s About Data, Not Health

Context: The recently released draft on National Digital Health Mission (NDHM) could pose technological and logistical challenges besides leading to minefields of ethical issues.

Features of the NDHM Draft:

• Centralized Health Records: It seeks to go beyond the segmented use of technologies by creating integrated databases containing health records of all citizens.

• Electronic health records of patients will become nationally portable, instead of remaining locked in the facility where a person is treated.

• A National Digital Health Authority: to be constituted for providing health-IDs to the citizens.

Advantages of Digital Technologies: for overcoming inefficiencies, ensuring better utilization of available resources, delivering certain services and follow up for faster data collection.

• For E.g. Their use in several disease-specific programmes such as TB control and immunization has yielded good results..

Issues with the NDHM

• Technological and Logistical issues

• Huge Data Collection: Creating electronic health record for every citizen will be many magnitudes higher than UID (Aadhaar) which included demographic information, iris data and fingerprints.

• Moreover, this data would be based on the physical, physiological or behavioural characteristics of data principle, which makes the collection process more complex.

• Drafted as a new Surveillance tool: 

• Expansion of definition of ‘data judiciaries’: to include neighbourhood yoga or wellness centre or pharmacy.

• Hospitals and governments will be allowed to collect ‘sensitive personal data’ of patients, including bank account and payment instrument details or religious beliefs.

• Falsified Consent: The consent for the data will be taken prior to the sharing of the data which can be used for statistical analysis and policy formulation.

• Recently in Kerala, COVID patients mobile phone data was accessed without their consent.

• Medical Community divided over its success: Since there is no local evidence to justify investments in developing universal digital health identity system.

Way Forward: 

• Ensure Accountability of Data Fiduciaries: A national register of all health providers will have to be developed to tag every record to a provider, to ensure traceability and accountability of medical records.

• This is vital, given the imperative for India to get back onto a high-growth track to create at least 90 million non-farm jobs by 2030.
• India needs to enable 1,000 or more small or mid-sized firms to scale up to large firms, and 10,000 or more small firms to scale up to mid-sized firms

• Lesson from Australia: The ‘My Health Records’ of Australia has had a mixed response.

• Privacy concern was handled: through the introduction of the ‘opt-out’ option.
• Restricted entry to physicians: the percentage of records accessed by them is minuscule compared to records uploaded onto the system.
• Court order against the state and police accessing the records.

Conclusion: Digital technology could help improve the functioning of health systems, but digital health can’t be a panacea for a bad public health system.