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#Thread: The Indian government on Aug 27 released a data management policy for National Digital Health Mission. The policy is a framework for how data with the mission, by hospitals, health companies, startups, etc, will be governed. #DigitalHealth 1/n medianama.com/2020/08/223-na…
The government has given only ONE WEEK for the public to respond to and give their inputs on the policy. It’s a blatant deadline and goes against the spirit of consultative policy making. 2/n medianama.com/2020/08/223-na…
A week is not enough for civil society to respond to concerns, or for businesses to weigh cost-benefit. In fact, it violates the govt’s own Pre-Legislative Consultative Policy, which requires a 30-day consultation period for policies released by govt ministries/departments: 3/n
PM Modi announced the #NDHM on Aug 15, he said “every Indian will be given a Health ID” that will contain a person’s entire medical history such as “all tests, every disease, which doctor gave you which medicine, when, what were your reports”. 4/n medianama.com/2020/08/223-na…
Although a #HealthStack has been in the making since 2017, work on a national Digital Health system accelerated after the COVID-19 pandemic and development of #AarogyaSetu. 5/n
In April, the govt said that #AarogyaSetu may function as the “initial building block for India Health Stack”. 6/n medianama.com/2020/04/223-aa…
The Health Data Management Policy will govern all data of every entity in the #NDHM incl. data of patients, those holding Health IDs, doctors, hospitals, consent managers, & anybody in the system that collects and processes personal or sensitive personal data. 7/n
The policy will govern sensitive personal data, which includes biometrics, medical records, genetic data, sexual orientation, transgender & intersex status, caste/tribe, health and financial data, religious affiliation/belief. 8/n #DigitalHealth
It includes mental, physiological, and mental health data, and bank account, debit/credit card data, or any other payment data. Sensitive personal data has higher stakes, & needs higher protection. 9/n #DigitalHealth medianama.com/2020/08/223-na…
It will also govern data collected and processed by Health Information Users and Providers, which are key to #NDHM. Will be used by hospitals, patients, and doctors to access patient data via consent managers.10/n #DigitalHealth medianama.com/2020/08/223-na…
Both the mission & Health Data Management Policy will be implemented by the National Health Authority, presenting a possible conflict of interest. Under the policy, apart from pvt entities, the NHA itself may be a consent manager, which means even it may handle user data. 11/n
Under the policy, one of the ways a Health ID can be created is by Aadhaar authentication. A user’s personal data will be linked to this ID from different sources such as hospitals, labs, and the user can also upload their own health records. 12/n medianama.com/2020/08/223-na…
Although the policy has stated that neither Aadhaar not Health ID will be mandatory, the Indian govt’s history with #Aadhaar has shown that Aadhaar is voluntary but mandatory. Case in point: Mandatory Aadhaar-PAN linkage. 13/n medianama.com/2020/08/223-na…
The policy also says the govt can ask data fiduciaries (hospitals, labs, digital health apps, telemedicine services in the ecosystem) for non-personal data for health & clinical research, academic research, policy making, “development and promotion of diagnostic solutions”. 14/n
Developments around Digital Health have occurred at warp speed since the COVID pandemic accelerated. This incl. Aarogya Setu and data sharing policies around it, Telemedicine Guidelines, development of APIs under the Bharat Health Stack, and now the #NDHM. 15/n
#DigitalHealth
Privacy issues with Aaroga Setu remain, even as it has been used to promote telemedicine and epharmacy platforms, apart from its main purpose. 16/n #DigitalHealth medianama.com/2020/05/223-aa…
The #NDHM is so far the largest project to digitise health care in the new data economy. Overall, this policy will have a broad and unprecedented impact on individual and patient privacy. It needs granular review by civil society and business. 17/n #DigitalHealth
The National Digital Health Mission's impact on patient privacy needs to be evaluated and adequate protections need to be put in place. Not to forget, the policy is being implemented in the absence of a Data privacy framework. 18/n #DigitalHealth medianama.com/2020/08/223-na…
The latest version of Personal Data Protection Bill is being deliberated on by a parliamentary committee, its proceedings were delayed due to the pandemic. This policy uses the bill as mainframe, but that does not make it a legal requirement on govt or private entities. 19/n
Meanwhile, an all-encompassing policy impacting privacy and safety should not be enforced without due deliberation. 20/20 #DigitalHealth #NDHM medianama.com/2020/08/223-na…
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