The National Data Sharing and Accessibility Policy of 2012 has been declared in the Gazette of India on March 17, 2012. This policy has recently been sent to all researchers working with the Indian Council of Medical Research, ostensibly in a bid to enforce the policy. Some of the interesting bits from the policy include:
- The principles on which data sharing and accessibility need to be based include:
- Legal conformity
- Protection of intellectual property
- Formal responsibility
- Sustainability and
- The National Data Sharing and Accessibility Policy (NDSAP) is applicable to all data created, generated, collected or archived using public funds provided by GoI directly or through authorized agencies.
- Three types of access have been defined: Open access, Registered access, and Restricted access.
- Creation of a state-of-the-art data warehouse and archive with online analytical processing capabilities. Data warehouse has to possess the following characteristics
- User friendly interface
- Dynamic or pull-down menus
- Search based reports
- Secured web access
- Bulletin board
- Complete metadata
- Parametric and dynamic report in exportable formats
- Conditions to place prices on data.
- A brief implementation plan, including budgetary provisions, have been outlined.
Since the NDSAP was enumerated, the Open Government Data Platform has become quite active and popular. Currently, the portal boasts of a wide range of datasets:
The NDSAP, although drafted with the correct intentions, fails to provide a technical buttressing of the aspirations outlined in it. For example, it bypasses the issue of medical and healthcare data collection, which comes with a myriad issues, right from the very process of data collection, to sharing protocols and safe archival. The lack of a strong legislative piece, like the HIPAA, further complicates the issues like protection of patient privacy and confidentiality. Till such time as these measures can be built up strongly, it seems that the data collected through routine surveys and surveillance methods, and research projects, would be subjected to the NDSAP guidelines.
However, there remains the need to develop comprehensive interconnectedness between the various cogs in the system. For example, a universalized Electronic Health Records system, which feeds anonymized and protected data into the portal which can be accessed by vetted and registered users for granular analyses or by the public for ecological analyses and observation of trends. However, this needs not only a massive influx of resources at all levels, but also a Herculean effort in the capacity building. Further, in a system where news bites of data loss are a common occurrence, systems to protect data from unauthorized access and use need to be put into place.
However, in the mission to institute a data capturing system, we cannot throw the baby out with the bath water – we cannot compromise on the quality user experience in lieu of interoperability or sharing protocols. In fact, it needs deep introspection at the highest levels of policy making if electronic records systems are to be deployed in the Indian setting. Doctors here are already working under a massive shortage of time, and providing them with another step in their already cluttered workspace would probably be counter productive for the patient’s best interests. So, in my opinion, although extensive data collection and big data analytics are the inescapable future of healthcare management and analysis, in the near future, India needs to invest in building systems first. Still, it is a good step to provide the frameworks for open data sharing and bolster the policy towards that end.