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Open House on National Digital Health Mission: Stakeholders want no liability for data, fair discovery, and more.

Issues related to privacy, liability, data sharing, consent and incentives were raised

“IMA blatantly said that we won’t participate because there is no consent from patient to doctor on technical issues (of telemedicine). I am raising this point intentionally again because there is Supreme Court verdict that there should not be telephonic consultation and here we are proposing that this should be teleconsultation,” a participant said during the Open House conducted by the NHA to discuss the last three consultation papers of the National Digital Health Mission.

These papers were on the Unified Health Interface and Health Professionals and Facilities’ Registries- three components that form key building blocks of the government’s digital health mission which will enable not only appointments but also a number of teleconsultations and the creation of an individual’s lifelong, longitudinal health record.

This is the second story in a two-part series on events that took place during the Open House conducted by the National Health Authority on the Unified Health Interface, Health Professional’s and Facilities’ Registry. You can read the first story here.

In brief, what happened: During the nearly two hour long meeting, multiple stakeholders put forth questions and comments that reflected long-standing issues that the NHA needs to address and clarify on for the various stakeholders. Atleast one public consultation meeting has taken place for each of the three papers and it has been four months since they were released. While the NHA provided a statistical topic-wise overview of all the inputs it had received so far which we elaborate on later in the story; however during the meeting the concerns raised ranged from healthcare service provider verification concerns to concerns around data sharing and protection liabilities that will fall on the doctors. The NDHM proposes to digitise sensitive health data for potentially all citizens, with Electronic Health Records that may contain their health data from birth to death.

What the stakeholders said

1. On Consent

Allow family members to give consent: The UHI should enable a provision for  family members to give consent to share an individual’s health data in case emergencies a representative from health exchange platform IHX pvt. ltd. said. They also recommended that in any case there should be a set of Electronic Health Records that should be available to the healthcare service provider even in absence of consent.

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Procedural consent in telemedicine: UHI should have a procedure for the patient to give ‘procedural telemedicine consent’, a participant said, claiming to have had conversations with various members of Indian Medical Association. This would mean explicit consent to go ahead with the consultation via telemedicine and, according to the doctor,should also include all technical grammar in it. Referring to a 2018 Supreme Court case where two doctors were indicted for dispensing medical advice over the phone, which ultimately proved fatal, the participating doctor said that the absence of procedural consent was resulting in hesitancy among doctors towards the NDHM.

2. On verification of health professionals, facilities

Deadline for verification: State Medical Council’s verifying doctors should get a deadline, one of the doctors said, in response to the Health Professionals Registry’s proposed verification. After a certain period of time from when a health worker enrolls themselves into the Health Professionals Registry, providing all details, if the SMC does not respond it should be assumed that the worker’s credentials are authentic.

Under the Health Professionals Registry, such State and Central Medical Councils and such other professional bodies have to authenticate an enrolling healthcare worker.

Including associations of allied health professionals:  Bodies of allied health professionals like radiologists, lab technicians, etc. should be included as a verifying body in the Health Professional’s Registry, like the SMC’s are for doctors.

3. On data governance, privacy

 Centralised model for data governance: Doctors backed a centralised model of data governance for the Health Professionals Registry. They reasoned as follows:

  • This was because, one of them said, NDHM’s help will be needed by the SMCs and the central Medical Council in keeping these databases of the doctors who are registered, who are retired, who have passed away and so on.
  • Another reason was that it would provide a central authority to verify and deny authenticity of enrolling healthcare workers.

On who will be the custodian of the data:  Over concerns that if the doctor was made the custodian and held liable for patient data

  • The patient be made the custodian of the data, with the doctors and the government being co-custodians.
  • That the doctor be regarded as the data entry mechanism, while the custodian of the data should be the central system i.e the NDHM.

4. On the search mechanism of the UHI

On ranking of Health Service Providers (HSP): Concerns of fair discovery as well as suggestions to provide more information on Health Servcice Providers were put forth on the Unified Health Interface’s proposed model of discovery.  Multiple participants in the meeting had questions and concerns about the Unified Health Interface’s discovery mechanism. These ranged from With regards to the latter, they had the following suggestions:

  • One of the doctors suggested that HSP’s be asked to self-disclose how many cases they have handled under a particular service, outcomes they have achieved, and papers they have written to gain preference in the search rankings.
  • Another suggested that the NDHM lay out a facility to close an encounter/consult with a HSP that requires they have disclosed the outcome of each encounter.

However, according to third doctor -another participant- such rankings could lead to hesitancy among doctors from adopting the NDHM.

Also allow clinicians to find labs: The UHI should provide a facility for heathcare service providers to find each other, a participant said. An example he gave was of a small clinic looking for a lab to send samples to.

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Request for technical details: One of the participants also asked for more technical details about how discovery would take place on the platform.
“Some of this needs a lot of introspection and there are technical solutions available in terms of making data available like this differential Privacy. There’s a lot of research also happening on ranking with certain fairness constraints, so it will really be helpful,” he said.

5. On implementation of the NDHM:

Incentives: Multiple participants suggested that the government provide incentives to Health Service Providers to participate in the NDHM such as tax rebates, and registration approval. Concerns were raised about participation from doctors at the grassroots and small clinics, which may find digitisation otherwise expensive, being incentivised enough to join the NDHM.

Making it mandatory: One of the doctors also suggested that the NDHM be made mandatory and be simulatenously piggybacking with incentives for enrollment.
“If you look at the overall schema or why we want to unified health records its to unify health information for citizens irrespective of the Avenue in which it is created. On that level itself, I think it’s worth the thought to think about a mandate to be enrollment onto the USI platform, which is piggy-backed by an incentive to apply, implement, customize and onboard a digital health recording platform at all entities,” he said.

Participation by international doctors : Over 4,000 Indian-American doctors were also planning to consult with Indian patients through the NDHM, a representative of the US India Strategic Partnership Forum present at the meeting said. Responding to it, R.S. Sharma CEO of the NHA said that he did not see a problem with it and added that the system would not be bound by national boundaries.

Breakdown of comments received

Overall, here is what the NHA provided as a paper and concern wise breakdown of the comments it has already received through its website, email, webinars and interestingly even social media channels:

By Paper:
Out of 329 comments received-
48% were on the Health Professional’s Registry
33.4% were on the UHI
18.5% were on the Health Facilites’ Registry

By area of concern:
23.4% were on implementation – as in how the concepts would be implemented across the country, in areas where other infrastrucure is weak.
25.3% were on policy – such as data sharing mechanisms, data regulations, etc.
51.1% were on product- Such as the design principles as well as technological aspects of the building blocks

The consultation process so far

So far, the NHA has conducted consultations on the

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In July, it held public consultation meetings on the Healthcare Professionals Registry and Health Facility Registry. It had conducted consultations on the draft implementation strategy and Health Data Policy consultation last year as well and is expected to release several other papers for further consultation.

Also read:

Written By

I cover health and education technology for MediaNama. Reach me at anushka@medianama.com

MediaNama’s mission is to help build a digital ecosystem which is open, fair, global and competitive.

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