Let me make money by selling my Health Data

Under just released draft policy for collecting personal health data, Government wants to collect / compile following data for all 1370 million Indian Citizen

Highlights of draft policy :

Ø  The ownership of data will be with the individual

Ø  Any “ Personal Data “ can be collected ONLY on consent from individuals and they will be allowed to revoke their consent or restrict any sharing of Personal Data

Ø  Govt has proposed a set of “ Minimum Standards “ for Data Privacy Protection, to be followed across the board, in compliance with applicable laws and regulations

Ø  Data collected across the Digital Health Ecosystem, will be stored at 3 levels :

          #   The Central Level

          #   The State or UT level

          #   The Health Facility level

Ø  At each level, only that much data will be stored as is essential for functionality

Ø  If Data is shared for clinical research or analysis, it will have to be anonymized

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Context :

Draft Health Data Management Policy  

National Digital Health Blueprint

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Do I foresee any problems in this initiative ?

Govt unveils data policy for digital health mission / 17 Aug 2020 , will cover :

[ A ]     Sensitive Personal Information

[ B ]     Personal Health Records

[ C ]     Health Locker

As far as data planned to be compiled under “ Sensitive Personal Information “ , this news report mentions following :

 

Srl No	Data Field  proposed	What I have proposed in my earlier blogs ( listed below )	This will face strong resistance from public	Seems irrelevant – how does this help ?
1	Sex life		✔
2	Sexual Orientation		✔
3	Caste	✔
4	Religious Affiliation	✔
5	Political Affiliation			✔
6	Genetic Data	✔
7	Biometric Data	✔
8	Bank Account		✔
9	Credit-Debit Card			✔
10	Other Payment Instruments			✔
11	Physical Health Data	✔
12	Physiological Health Data	✔
13	Mental Health Data	✔
14	Medical Records and History	✔
15	Transgender Status			✔
16	Intersex Status			✔
17	Data relating to various Health Conditions and Treatments , such as Medical and Health Records	✔

 

Does National Health Authority have satisfactory answers for public resistance ?

In short , NO  !

As far as the rollout is concerned, following “clarifications “ ( not very convincing ) , are provided by Shri Praveen Gedam ( Additional CEO – NHA / addlceo@nha.gov.in ) in :

With pilots apace, health UPI rollout soon  

Extract :

Ø  First Module

          Every person enrolling will get a Health ID and all the data of that person will be

          linked to that ID, so that longitudinal medical history of the person is available at one

          place

Ø  Second Module

     “ DigiDoctor “ which is a database of doctors

Ø  Third Module

           “ Healthcare Facility Registry “ with a database of facilities, including hospitals,

           clinics and labs. This will range from tertiary hospitals to primary health centres and

           sub-centres

Ø  Additional burden for Medical Professionals to enter data into system

          “ We are incorporating many special features in the module which will allow them to

          scan a report or enter hand-written prescriptions or even those using universally

          accepted medical nomenclature “

Ø  Process of Enrollment

“ … will be voluntary not just for individual but even for doctors and hospitals. Respective authorities have the right to take the decision whether to join or not “

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What do you propose to get the majority (except, may be the very rich ) to sign up ? :

Ø  To begin with , from the CONSENT FORM ( I suppose there will be one ONLINE , listing all the Data Fields proposed ), drop the following fields :

1 – 2 – 5 – 8 - 9 – 10 – 15 – 16

It just cannot be in the nature of,

“ I agree to the Terms and Conditions of NHA Policy for Collecting Personal Health Data “ ( YES – NO ) ,

- the kind you find on umpteen websites / mobile apps ( which users sign without reading, since the write-up is too long and too convoluted , specifically drafted to confuse the user or to keep him ignorant ! )

Ø   Provide  POWERFUL / IRRESISTIBLE incentives for citizen to give consent

These could be :

#   FREE delivery of different types of Health-care Services ( from Govt owned / administered establishments ), and / or FREE Health Insurance Cover ( Govt paying the insurance premium ) for availing certain services from PRIVATE hospitals / Nursing Homes / Labs etc

#   Enabling the REGISTERED USERS to earn money ( may be Rs 10,000 pm ? ) by granting explicit permission to NHA to “ Sell “ his Personal Health Data to any ONLINE BUYER, but strictly in AGGREGATED / ANONYMIZED format ( without revealing any of his contact details or other personal identifiers )

This can be implemented by , broadly following the CONCEPTUAL FRAME-WORK ,outlined in my following earlier blog / email :

          Digital Dividend from Demographic Data [ 4 D ]  ……………………..( 14 Feb 2019 )

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My past E Mail on this subject :

Preventing ( illness ) is better than Curing  …………………………………………..[ 17 Aug 2020 ]

(  Find here, links to my earlier 12 E Mails on this subject , since 2018 )

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Dear Dr HarshVardhanji,

No other country in the entire World , has attempted to create a National Health EcoSystem , which is so designed that Artificial Intelligence , using massive health records of a BILLION persons, can actually PREVENT illnesses !

Congratulations for attempting this

But the entire exercise will become a STILL-BORN CHILD , unless we manage to get a billion Indian Citizen to give their CONSENT to join the scheme

And that CONSENT will not come unless my above-mentioned INCENTIVES are integrated into the Scheme

With regards,

Hemen Parekh  /  hcp@recruitGuru.com  /  03 Sept 2020