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Feedback on consultation paper on the proposed Health Data Retention Policy
Feedback on consultation paper on the proposed Health Data Retention Policy

December 29, 2021

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The National Health Authority (NHA) published a consultation paper on the proposed Health Data Retention Policy in Nov 2021 for feedback from stakeholders. The policy aimed to maximize benefits from usage of this data, while keeping the risks associated with personal health data to the minimum. The paper classified health data into various categories and proposed minimum retention duration for these categories. The proposed approach also covered the mode of retention and proposed a governance structure for this policy.

NASSCOM and the Data Security Council of India (DSCI) made a joint submission on this paper.  In our feedback, we pointed out the need for such a policy to ensure standardization in market practice across India’s healthcare ecosystem and welcome the proposed approach.

The key suggestions made in the feedback are listed below.

  1. Phased implementation: Till the proposed data protection law comes into effect, we suggested that the policy be made applicable only to entities participating in Ayushman Bharat Digital Mission (ABDM). For entities outside the ABDM, the health data retention policy may be presented as a set of voluntary guidelines.  Once the law comes in to force the scope could be expanded to cover all healthcare entities. MoHFW and the NHA in consultation with the Data Protection Authority (DPA) can roll out health data retention policy as a code of practice under the PDP Bill, thereby allowing them to work together to implement such a health data retention policy at a “universal” level across the healthcare sector.  
  2. Health Data classification: Rather than a blanket retention duration for all health records, different durations should be defined as per a classification. In this context we agree with the classification proposed in the paper, which envisages four categories - inpatients, outpatients, deceased patients, and special categories.
  3. Retention Duration: The paper proposes a minimum retention period of 10 years after the last entry/encounter for inpatients, outpatients and deceased patients. For certain exceptions like Medico Legal Documents, Immunization records, Clinical trials, Birth Register and Death Register the paper suggest that records are maintained permanently. We agree with the duration suggested.
  4. Risk Management: To account for privacy and security risks, we recommended that the policy set out clear archival strategies that are to be followed after the minimum periods are completed (1) health data that does not have to be maintained permanently should be deleted or, if maintained for research and statistical purposes, anonymised, and securely stored; and (2) health data that does have to be maintained permanently should be deidentified to reduce privacy or security risks.
  5. Mode of Retention: The policy should permit health data to be maintained in both digital and physical formats and should encourage entities to transition to the use of digital formats over time. This approach is suggested for two main reasons.  First, the policy should recognize the retention of physical records since this is necessary to maintain legacy records. Second, at present, many healthcare entities may not have the infrastructure to digitize health data creation, management and storage systems and processes end-to-end.  

Our submission is also attached. 

 


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20211224 - NASSCOM DSCI - NHA - Consultation Paper on Proposed Health Data Retention Policy.pdf

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