The draft National Health Data Management Policy (draft Policy/NHDM), was released by the Ministry of Health and Family Welfare (MoHFW) for public consultation in August 2020. The draft Policy follows the path set out by the Government of India under the National Health Policy, 2017 (NHP), envisioning the creation of a seamless nationwide digital health ecosystem, and sets forth a framework to ensure “privacy by design” in the implementation of the National Digital Health Ecosystem (NDHE).
NASSCOM reached out to members for their inputs on the draft Policy on 7 September 2020. Subsequently, NASSCOM organised an online policy round-table on 17 September 2020 to discuss the feedback received. Earlier yesterday, NASSCOM submitted its feedback on the draft Policy (full submission is attached).
In the submission, NASSCOM highlighted the key role played by the National Health Authority (NHA) as a specialised implementation agency for the components envisaged under the National Digital Health Blueprint (NDHB) and attaining the goals of the National Digital Health Mission (NDHM). Accordingly, NASSCOM urged the NHA to play a key role in the formulation of the Codes of Practice to be issued by the Data Protection Authority (DPA) proposed to be set up under the Personal Data Protection Bill, 2019 (PDPB 2019), on issues relating to health data.
NASSCOM appreciates the emphasis placed by the draft Policy upon the need for an interoperable health-data sharing framework, based around the principle of primacy of individual consent, and exploring mechanisms for a consent management framework, by inter alia recommending the creation of a consent manager framework, and creation of consent-artefacts that capture a data principal’s consent relating to his/her health and medical records. Likewise, given the nascent stages of the framework, NASSCOM appreciates the voluntary nature of participation in the NDHE, and the emphasis placed upon the principle of non-exclusion.
Moreover, NASSCOM noted that there are several aspects specific to health data that have been considered under the draft Policy, such as the recognition of the distinction between health and medical record data, and identifier data, which could be vital inputs towards finalising the PDPB 2019. Accordingly, NASSCOM suggested that the MoHFW may consider raising such inputs with the Joint Parliamentary Committee (JPC) currently tasked with reviewing PDPB 2019 and recommending amendments to the PDPB 2019.
Accordingly, our specific recommendations relate to:
- Key issues that the NHA may raise with the JPC to ensure that the vision set forth in the draft Policy is consistent with the PDP Bill;
- Key areas where the NHA may advise the DPA towards framing industry codes of practices relating to mechanisms being adopted in the draft Policy;
- Standalone areas where the NHA may start implementing mechanisms recommended in the draft Policy.
Overall, NASSCOM highlighted the need for greater harmonisation with the PDPB 2019, while keeping in view concerns specific to the management of health data in the NDHE.