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

Opportunity does not knock twice

And , it certainly does not – even once, beg permission to enter your office!

Context :

Working Group to Push Remote Working in IT,ITes   /  29 Aug 2020

Extract :

Ø  This working group is under the larger inter-ministerial group set up by the Ministry of Electronics and IT , which has been coordinating with other ministries including telecom, labour and commece to bring in largescale reforms to boost the work from home model

Ø  The industry has sought for streamlining laws that will enable it to not just work from home but also from anywhere

Ø  In the context of work from anywhere, the industry requires technologically agnostic solutions for connectivity. The current rules require VPN connectivity , but the industry should be allowed to use any technology as long as it is secure

Ø  …. Agents should be allowed to connect with the local service of the OSP without first getting into the physical OSP cloud connectivity centre

Ø  There are other issues such as mandatory location reporting , which may have to be revised if the employees are given the choice to work from anywhere

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From a meagre export of, under $ 100 million in mid ‘80s , how did our IT / ITes industry manage to reach export of $ 190 BILLION , last year ?

Because someone in the Central Government took the following bold / out-of-box decisions to UNSHACKLE the industry :

Ø  Anyone can import computers

I remember that, in 1982, when the company that I worked for, wanted to import a main-frame computer, we had to ask DOE ( Department of Electronics ) to issue an advertisement ( tender ) at our cost . DOE, even decided what configuration was best for us, by changing the specifications we wrote !

We could not advertise on our own !  Offers were received / evaluated by DOE and negotiations with the suppliers were also conducted by DOE ( we were allowed to join the negotiating team but with little say in the matter ! ).

Ø  Any private company / individual can carry-out “ After Sales Service “ of imported computers

At one time, CMC ( Computer Maintenance Corporation of India / a Government of India undertaking ) had the ABSOLUTE MONOPOLY of maintaining all the computers imported from abroad (even if owned by private-sector companies). No private party can do this !

Ø  Any IT company can export SOFTWARE directly ( bypassing any Govt agency ) , using leased lines from telephone companies

A few decades ago, when Indian companies started getting foreign orders for development of software, they were COMPELLED to route their exports, only through VSNL ( I believe one had to handover to VSNL, a CD / HARD DISK , loaded with the code ! ). Reason ? Some govt babu believed that IT companies were under-invoicing !

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Today, VPs of Indian IT companies constituting the “ Working Group “- would laugh at the above-mentioned “ Reforms “ !

But, it is possible that the IT Companies around the World, are right now laughing at the plight of Indian IT / ITes companies, who must BEG the government to UNSHACKLE them from ALL rules / regulations, which come in the way of :

Ø  Working from Home

Ø  Working from Anywhere

Dear Shri RaviShankar Prasadji,

This is no time ( considering the urgency to revive the Economy ) to ask IT / ITes industry :

“ Which rules / regulations, do you want ditched / deleted ? “

This is the time to tell the industry :

“You have to export $ 500 billion by 2024

Now write down your own policy and go ahead “

Policies such as the following RPG Remote Working Policy , where Chairman Harsh Goenka says :

“Our new work from home policy shatters the notion of traditional workspace and productivity and has turned it on its head.

Employees who are not operating machines in our manufacturing businesses or do not have a client obligation in our technology services business, can work from ANYEHERE even after the pandemic is behind us.

It aligns with our vision tenet of touching lives and brand promise of happiness “

( source : All RPG sales staff can now WFH permanently  /   31 Aug 2020 )

It is time to ditch the “ Incremental Reforms “

It is time to take bold / out-of-box decisions, listed in my following 16 earlier emails :

If Mohamed cannot go to Mountain                                 [ 26 July 2015 ]

" BACK FACTORY " OF THE WORLD ?                               [ 09 Sept 2015 ]

A NEW ECONOMIC ORDER ? aka " Start Up Act - 2015 "   [ 12 Sept 2015 ]

How About Virtual Call Centers ?                                     [ 04 Oct 2016 ]

Will Holograms beat H1B Visa Ban ?                                [ 31 Jan 2017 ]

Wormholes Across the World ?                                        [ 03 Mar 2017 ]

Brain Inc 2.0                                                                  [ 21 Aug 2017 ]

Ready to be Ridiculed                                                     [ 23 Aug 2017 ]

India BPO Promotion Scheme                                          [ 11 Apr 2018 ]

Leveraging our Engineering Talent                                   [ 13 Dec 2018 ]

Caused by CoronaVirus ?                                                [ 04 Mar 2020 ]

Opportunity in Adversity ?                                              [ 13 Mar 2020 ]

Permission to create jobs ?   ………………………………………………[ 14 Mar 2020 ]

Congratulations, Shri Subramaniam                                 [ 25 Apr 2020 ]

Work from Home ( WFH ) : Perseverance Pays                 [ 27 Apr 2020 ]

From Distant to Digital : New Work Culture                      [ 29 Apr 2020 ]

 

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With regards,

Hemen Parekh  /  hcp@RecruitGuru.com  /  31  Aug  2020