Thread by @pseudo_sapiens

Majority of people (medics as well as non-medics) who are going ga ga about Single National health ID have got no clue about the issue, intricacies involved as well as fallouts (many of which can be extremely serious) & have done no background research on this.

Just because it is digital and just because it is unitary DOES NOT (AND I REPEAT DOES NOT) make it - Correct or sensible or the perfect solution.
Before we even talk about a single National health ID or system we need a lot of transparency & data security discussions on table

This is NOT something that you can announce as a policy gimmick for your political Limerick.

If you want to educate yourself about digital health IDs & the legal safeguards needed look to the EU digital health laws & requirements - We are nowhere near.

I am going to attempt to explain why a Digital Health ID can be concerning (it is not possible to cover extensively so I am going to just touch upon nuances) with the hope that it pushes people to discuss, research & demand more information from policy makers

First & the most important thing is - Privacy. Health, our bodies, our illnesses, our disabilities or different abilities, our choices regarding addressing them like treatments, medical advice etc etc are extremely personal.
How do we cater to the privacy is a challenge

Even in routine medical practice these are tough challenges to resolve, consent has been evolved as one of the methodologies to safeguard individual’s privacy as well as autonomy regarding what is most central to our existence- Our bodies & our health.

This consent has to be taken & given willingly, without coercion both - direct & indirect. For eg in case of cowin - You can keep insisting it is voluntary - but there is nothing voluntary when the choice faced with is to excluded from receiving a life saving vaccination

Which then brings us to the intended purpose of the ID and it’s uses and it’s mandations & exclusions & controls. Controls in terms of who can access, who can be allowed to access, for how long, to what extent & the list goes on…..

The announcement of a health ID for all is neither a solution nor an answer it is merely a statement, post which we are left to guess all of the above intended purposes, mandations, exclusions & controls….there have been no discussions, no evaluation of pre-requisites

Impact assessment is another important aspect associated with introduction of any intervention in healthcare- That impact assessment for a country like in India in terms of introduction of a Digital Health ID can be variable depending upon region, literacy, economic status etc

An Impact assessment study for a digital intervention in a country like India can explain difficulties as well as solutions in this context, whether it will in effect lead to any change in the existing infrastructural as well as standardisation scenario.

Then comes standardisation - A unique national health ID doesn’t solve the existing problems of lack of countrywide standardisation of patient data & record entry, reporting, testing etc
To understand the complexities & challenges this poses US states are a great example

The role of access to & abuse of Data that is the real deal behind the IDs by Insurers, employers, individuals, pharma corporations, digital health care players etc - You donot even have an icerberg’s tip level idea of Abuse potential of this data.

Insurers, employers, individuals can abuse these datas through indirect coercion mandates. Digital Health players are already abusing patient data available to them through third party HIS use for target advertising etc….

Infrastructural requirements of digital healthcare delivery are more than simple zoom/video calls with doctors - the pandemic has laid the reality of Indian digitalisation through the impact assessment on digital education- The divide between those with means & without is huge

Do read the e-health report by WHO to understand the nuances involved, Also read EUs e-health & digital Heath legislations along with their data privacy & access mandates also their follow up reports on achieved progress & review

Read about the challenges faced by patients when insurers refuse to support some or partially report some but not all forms of e-health delivery in different states in US.

It has been over a year since Indian telemedicine practice guidelines were introduced till date - I have not seen any review of them, no clarity whether teleconsult is covered by insurance, no rules or updates what so ever for data aggregators, tele health service providers

No clarity regarding consent complexity involved, no clarity regarding specific rules for specific specialities, no rules regarding introduction & use of telemedicine devices & their clash with existing legal frameworks in some instances

Lack of stringent data safety regulations & laws are a major roadblock in digital health ID mandates especially with an unregulated digital health provider sector and private sector. These are absolute pre-requisite to health data digitalisation which are non-existent.

Also the existing state of our digital health system adoption in public health sector can be described at best as pathetic. A simple eg is registration of Drs for medical licence there are about 20 states that have no online means for medical license registration..

Every state demands registration with its own Medical council even if you have a MCI certification, so basically if you did your MBBS from Haryana, MD from Delhi & DM from TN you will need to go in person to register with medical council of each despite having a MCI certificate

Now let us accept as is the contention of many doctors celebrating a single health ID that this will save them from those multiple registrations- to be honest nothing accept administrative will was stopping the single registration & it’s digitalisation across India

In Delhi the entire registration process is digital but they still need/want in person verification, but Haryana has not even got any digital process in place…these are two adjacent states, If Delhi could what was stopping Haryana. Digitalisation was available to both.

Also top down uni flow system cannot function for health schemes, projects etc in a country like India where political differences between central & state governments can impact vaccine distribution, use of health issues into political bickering.

These nuances are like one third of the tip of iceberg surrounding the complexities of Digital Health Id, 99% of iceberg is still to be seen.

When there is no engagement with the visible tip & intent to address it, how can we even imagine dealing with the unseen iceberg.

Let me explain abuse potential of e-health providers through a simple eg that I as a doctor & my patients routinely experience.

Due to safety concerns regarding patient data I donot use any online e-Heath service providers - yet I am listed on most & I have no means of to delist

I use my own HIS for my appointments, but many a times patients try to boom with us using the e-health portals who without consulting or connecting with us give them an appointment- there is no quick or easy legal remedy for me or patients to address this violation of consent

Consent is not just about seeking or getting permission- Consent also carries within it the ability to limit or retract consent with certainty & ease.
There are no provisions for the same for digital health in India because no frameworks exist.

With e-health portals who double up as data aggregators as of now you cannot demand data deletion or non-use from their database.

This is another thread of concerns involved with digital health providers & data from few days back -

https://twitter.com/pseudo_sapiens/status/1400133596560510976?s=20

Another one in response to the QTed tweets - an implementation without requisite infrastructures & safeguards in place in response to something as personal as your health & body is violative at the least

https://twitter.com/pseudo_sapiens/status/1435111286086402051?s=20

And by all means subscribe to the ID if you want to but to do being aware of the issues, consequences & lacunae involved & also insist that like yours the choices of those who choose not to use this ID have the option to say NO without retribution.

RS Sharma by downplaying the role of privacy which is like the essence of anything related to Healthcare & Healthcare interventions has already set the bar very low in terms of expectations.

And this

https://twitter.com/pseudo_sapiens/status/1443235340035129348?s=20

And the abuse potential by Health insurers right at the time of giving an insurance policy is immense (as such we see absurdest reasons for claim denials with hardly any legal remedies Available to people)