UDLCO summary:
The first WhatsApp group discussion transcripts begin with a news-piece about legal penalty for a few doctors sharing their patient's OT videos over WhatsApp. Various aspects of the evolution of patient privacy confidentiality protections are discussed. The second WhatsApp group discussion transcripts begin with the first group discussion getting shared as an interjection when a similar reference to patient privacy is made. Valuable links related to Indian patient privacy act and open source software are discussed. The third WhatsApp group discussion among global medical educators begins with a clinician sharing the medical education benefits of case sharing and there are opposing voices around the ethics of case sharing. It appears that patient privacy and confidentiality are significant trade offs to transparency and accountability in medical education and practice. Past published work on similars here: https://userdrivenhealthcare.blogspot.com/2016/02/the-indian-national-ehr-standards-and.html?m=1
Keyword UDLCO glossary:
http://userdrivenhealthcare.
UDLCO transcripts:
[02/08, 12:15] RB: This article describes and formally defines the Benhur effect derived from a 1950s movie in terms of achieving perfect healthcare outcomes through various means.
In many ways it follows as a logically contradictory and paradoxical solution to a much more famous effect from another movie in the 1950s called the Rashomon effect.
The actual manifestation of the Benhur effect (as felt in the movie and elucidated above) can happen to all stakeholders in a patient centred, team based learning group and is described in a quote below:
Read the full article
here👇
[03/08, 10:25] R : The Kerala High Court has dismissed a petition filed by a doctor and hospital staff who approached the Court to quash proceedings initiated against them for allegedly taking and sharing videos and images of a woman undergoing a cesarean operation to deliver three children, through WhatsApp.
The crime was registered against the doctors under Section 354(C) (Voyeurism) of IPC, Sections 66(E) (Punishment for violation of Privacy) and 67 (Punishment for publishing or transmitting obscene material in electronic form) of the Information Technology Act.
Justice A. Badharudeen observed that a prima facie case was made out against petitioners involving serious allegations. The Court thus declined to quash the proceedings against them.
“That apart, the WhatsApp videographs and photographs of the cesarean procedure sent by the accused were collected during investigation to justify the involvement of the petitioners in this crime, prima facie. Thus the matter shall go for trial, and, therefore, the quashment sought for cannot be considered. In such a case, involving very serious offences, quashment of the proceedings could not be resorted to. Hence this petition fails and is accordingly dismissed.”
The first petitioner is an Anesthesiologist and the second petitioner is a hospital staff and both of them were employed at the Government Taluk Hospital, Payyannur in Kannur district.
The defacto complainant underwent a cesarean operation in the year 2014 and delivered triplets. The specific allegation was that the first petitioner videographed and the second petitioner took images of the cesarean operation. It is alleged that the petitioners shared these videos and images through WhatsApp.
The petitioners submitted that the identity of the defacto complainant could not be ascertained from the videos or images and thus sought to quash the proceedings.
The Public Prosecutor opposed quashing the proceedings and stated that the petitioners outraged the modesty of the de facto complainant by sharing images and videos of her undergoing a cesarean operation.
The Court noted that the videos and images were recovered by the police from the mobile phones of the petitioners during the investigation.
The Court stated that the matter has to go to trial and cannot be quashed.
As such, the Court dismissed the petition.
Counsel for Petitioners: Advocates I.V.Pramod, K.V.Sasidharan, Saira Souraj P.
Counsel for Respondents: Advocates M.Baiju Noel, T.S.Likhitha, Shinto Sabastian, Public Prosecutor M.P.Prasanth
Citation: 2024 LiveLaw (Ker) 502
Case Title: Sunil P P v State of Kerala
Case Number: CRL.MC NO. 4223 OF 2022
Click here to read/download Order
[03/08, 10:29] RNR: As I always maintain, never ever share patient photos, especially for corporate promotional reasons!
[03/08, 10:30] PS: A welcome move.
[03/08, 10:33] RNR: The rule existed ever since Indian Medical Council Act was formulated.
Violation is a fashionable corporate trend.
Just like politicians, doctors too are taking liberties with confidentiality.
[03/08, 10:41] PS: Some things we understand intuitively.
In field of plastic surgery there are some in India and abroad who make videos from OT to post on social media .
Consent of patient - status of that is unknown
A Faciomax surgeon from south daily posts videos of his consults , anaesthesia and surgery on you tube . It's hard to believe that so many patients are okay to be used like this with consent .
Lastly there are professional groups where photos are shared for academic discussion or self promotion - but Whatapp can leak too as it's evident from this case
[03/08, 10:47] RB: Deidentified patient data capture is an integral part of any clinical project and publication can only proceed after there is signed informed consent.
However currently due to improved big data analytics, patient data is becoming more and more granular and every individual patient's data becomes deidentified into horcruxes and gets into a central case based reasoning engine toward data driven patient centred precision medicine.
Here's one regular workflow toward that end 👇
[03/08, 11:31] CE: Kerala is known for litigation
[03/08, 11:32] PS: Thank God for Gods own country
[03/08, 11:45] RNR: Under the new personal healthcare data protection acts, patients reserve the right to request removal of their data from any database at anytime. This is now a legal requirement, even if the data were de-identified. It is even more important with genomic data that can be commercially exploited.
[03/08, 11:48] RB: They can request removal of their deidentified data only if someone can identify with reasonable certainty that the data is theirs else we risk removing someone else's data!
[03/08, 11:50] RNR : It has been pointed out that with block chain technology, personal data can always be identified…
.
[03/08, 11:51] RB: Yes but has there been a demonstration?
[03/08, 11:52] RNR: Since the new legal requirements need block chain technology to be implemented at every step, it is a bit of a problem to de-identify patient data…
[03/08, 11:54] RB : Legal issues need optimising
[03/08, 12:00] RNR : By optimising, you mean, science as a business should be given an edge over the right to personal data? I am aware of that this is the predominant mood with Digitisers, Big Data Crunchers and AI developers… Many governments, fortunately, take the opposite view…
[03/08, 12:04] RB: No I meant science as a right for every citizen, which means they also need to contribute right!
Ideally for science they may need to contribute not just their life events trajectory (external medicine) data but also their internal medicine (lab and imaging) data and finally their autopsy data!
[03/08, 12:13] RNR: Profiling citizens has been the dream of every police department...
It has served those in power very well
Both can perhaps be justified, but can be contested in a court of law..
Moving towards depersonalisation as the goal of science was Hitler's dream...
He was a strong proponent of eugenics...
He even allowed the so-called Aryan doctors to irradiate the ovaries and testes of healthy Jews in the name of science....
Closer to our times are the Canadian Compulsory Sterilization Act of mentally subnormal citizens and the US Tuskegee Study of syphilis - striking examples of barbarity in health sciences...
One should tread cautiously even when serving an evil master, albeit 'Science'!
[03/08, 12:32] RB: Depersonalization and profiling may not be the same as deidentified patient data as science need not be interested in the political affiliation of the patient. All it needs to know are the life event factors (external medicine) that led to the patient's past, current illness and will influence his her future outcomes!
This would not only enable science to develop better solutions to patient problems but also understand and predict how they evolve.
There is no doubt that one has to tread carefully and carry every one along inclusively in this journey and hence the greater need for transparency and accountability in Science's endeavours such that it collectively realises it's follies in time!
🙂🙏
[03/08, 12:34] RNR: What an altruism, Dr. Biswas!
Time and again, it has been proved that business thrives in the altruism of _others!_
[03/08, 12:36] RNR: The belief that science has an answer to every malady is called _blind faith!_
Sounds familiar, doesn't it!
[03/08, 12:42] RB: Agree!
It's just that it satisfies some of our human curious desires to know and we often call it science if it can demonstrate components of a design that experiments and provides a measured comparator but yes at the end of the day its just a tool fed by duality!
At singularity all these may fall apart or even come together as a gestalt, aka Benhur effect, linked above.
Group discussion 2:
Summary: The breakthrough insight for Ux UI enthusiasts here is that if all hospitals start doing this regularly for each and every patient then it will become very difficult for even patients to identify themselves. At best even if they do they will never be able to prove it and will simply be left with a lingering uncertainty
Transcript;
[07/08, 10:37] +1 (805): This is an old study. But, it didn't find EHRs to help with improved patient outcomes except in specific settings. Don't recollect EHRs changing much in last 10 years
[07/08, 10:37] +1 (805): https://www.ncbi.nlm.nih.gov/
[07/08, 10:38] RB: Yes it's time to change our EMR design!
[07/08, 10:39] SJ: Rethink EMR design radically
[07/08, 10:40] AK: Yes, radical disruption is needed, to bring about any real change in the inert system.
[07/08, 10:40] RB : We are now actioning our rethought EMRs everyday
[07/08, 10:43] +1 (805): Ya no form is the way to go. With this much summarization and content extraction possibilities of LLMs we don't need to impose structure on data. We can parse it out into structure
[07/08, 10:45] +1 (805): We've been working with 20 - 50 page medical documents, and the content extraction rate and quality is surprising. If anyone has access to data both in text and structured format, we could build a dataset and demonstrate how accurate models are in extracting structure from text
07/08, 10:50] RB: Please feel free to utilise more than 2000 medical records from each one of our 1000 health professional student's online learning portfolios, here in our dashboard 👇
07/08, 10:54] +1 (805): Thanks a lot, Dr. Biswas!
[07/08, 10:49] VG: So, who is going to enter lot of text? Something like voice to text?
[07/08, 10:49] VG: Every doctor would have a decent mic to speak into, for every patient?
[07/08, 10:49] +1 (805): Ambient listening is already happening in healthcare
[07/08, 10:50] +1 (805): The quality of mics available today is stunning. Also blind source separation (isolating desired speaker from background) has been beaten to death over the decades.
[07/08, 10:52] RB: And that should come with her mobile phone
[07/08, 11:05] VG: Great idea.
[07/08, 11:15] VG: One question in that. Phone is typically a personal device, while EHR is running on a hospital network behind a firewall. How could this operationally win? Should we build an app on the phones that has the same authentication over internet as EHR, and move voice note from phone to EHR servers?
[07/08, 11:24] RB: One upside of allowing the doctor to take personal ownership of his her patient's data makes for a stronger commitment to the team based patient centred learning relationship an optimal EMR is supposed to facilitate
[07/08, 11:25]Aye: Privacy advocates won't be happy
[07/08, 11:26] Rakesh Biswas: More masala here👇
[07/08, 11:34] Aye: We must not comment on a matter subjudice.
From academic interests, if the data was anonymized, then how did the party get knowledge of it?
[07/08, 11:39] RB: Are you talking about one particular legal episode in those conversational transcripts? They are freely available online in newspaper links I'm sure
[07/08, 11:40]Ay: The c section case on top
[07/08, 11:41] Rakesh Biswas: https://www.lawbeat.in/news-
[07/08, 11:45] Ay: From the link
The petitioners submitted that the identity of the defacto complainant could not be ascertained from the videos or images and thus sought to quash the proceedings.
...
Hence, how did the party get to know
[07/08, 11:49] RB: The patient can always identify herself himself.
Hence the need for a strict signed informed consent before any kind of patient data sharing albeit deidentified
[07/08, 11:53 Aye: Consent needed yes, but about patient identifying themselves - I disagree.
Anonymized information should not be identifiable by the patient. It can then be identified by others too.
If needed, there should be a "cooling off period" if there are unique demographics that the patient can identify with.
For rarest of the rare cases, data usage should be indemnified by party.
In this case, it was a c section.
[07/08, 11:58] RB : The only way for the patient to not be able to identify her own information would be to hide it from her! There's no other way. Once a patient is shown her data invariably she would be able to identify unless she has language barriers or if the images are microscopic and she's not a trained pathologist
[07/08, 12:00]Aye: Not really.
Will share with actual examples to understand your perspective.
[07/08, 12:09] Aye: It will be worthwhile to illustrate the counter points of view with data, and that will take a while.
However, here's a c section video. How would a patient identify herself from this beyond reasonable doubt?
Caveat: Even in this video there could have been some post editing done to improve anonymization further, to mask identifiable patterns
[07/08, 12:21] RB: Easily if it's shown to her with the information that it was filmed in the hospital she had her own caeserian on a date that was close to her operation date.
However the breakthrough insight for Ux UI enthusiasts here is that if all hospitals start doing this regularly for each and every patient then it will become very difficult for even patients to identify themselves. At best even if they do they will never be able to prove it and will simply be left with a lingering uncertainty
[07/08, 12:24] Aye: Exactly, hence the cooling off period may also be needed.
The English Court of Appeal has an often cited ruling on usage of anonymized data.
[10/08, 00:44] RS +1 (904): Seems some of you are interested in Generative AI Software solution - give Amazon Q (It used to be called Code Whisperer) a try (https://aws.amazon.com/q/) - I have compared it with Microsoft's Copilot, OpenAIs Codex, Meta's CodeLLama and few others - while each has their strength and accuracy varies, Amazon Q is probably the most user friendly and intuitive
[10/08, 00:45] RS +1 (904) : Just a quick disclaimer though, I am with Amazon AGI and AWS org and it's one of our primary product.. so you may say i am biased.. but we have compared our product with all the competitors very thoroughly to give the proper picture to the customer .. and as you know, in amazon we are known for customer obsession 🙂
[10/08, 00:49] RS +1 (904): Btw, just my 2 cents from the above communication on No-Code development and Gen AI based software code - These two are very different paradigm as rightly pointed by Abhishek - No-Code dev tools are existing for a while in the form of GUI based code dev - from 3GL to 4GL to 5GL to 6GL (as GL increases the code dev become more intuitive) - probably Microsoft was and still the leader in such tools.. Gen AI based code development is purely LLM based and Generative/Creative in nature
[10/08, 04:27]Ay: Of course biased... But whats wrong with that 🙂
Thanks for the list of code genAI
[10/08, 09:53] SJ: What would you like to get NABH to do for digital health?
[10/08, 10:22] ATP: Asian customers
[10/08, 10:22] ATP: my experience as CD - Clinical Director GE HealthcareIT, South Asia
[10/08, 10:22] ATP: India, Nepal, Bhutan,
Sri Lanka, Bangladesh and Maldives
[10/08, 10:23] ATP: they want everything. but free of cost
[10/08, 10:29] JG: That’s quite interesting, thanks for sharing. Does the coding assistant support multiple languages? Writing comments then having code completion akin to Intellisense on steroids should be quite a useful function of generative AI.
[10/08, 10:33] T: Thanks Dr Oommen
I will like NABH to raise the bar on their Achievement & Excellence category for their final Standards on HIS/EMR. This will, at least, bring some parity with the global standards
1. Under the Care of Patients category (COP), the EMR should be based on the clinical protocols. CDSS, CDM & AI will need a good base of protocol based data to be effective.
The draft standards mentions CDSS, but how can we use CDSS without a good clinical protocols based EMR/EHR
2. Under MOM - The software should provide drugs related alerts. COPE's physician drug order sets must be compliant to clinical protocols and drug alerts as far as possible
3. Under FPM - The draft standards only talk about vendors payments. It is totally silent on Amount Receivables. Delayed insurance payouts are a major reason for sickness in hospital industry and hence there is a need for Revenue Cycle MGT. module
Also, mature MNC HIS have strong Finance modules. At least, some thoughts can be given on this.
ERP, BI & BSC applications must be encouraged
4. Telemedicine - For the home health care module, the beneficiary identification standards must be stringent to prevent billing frauds & misuse.
5. For DOM & IMS - Technical experts opinion is required.
But use of clinical informatics, health informatics, ERP, BI +/-Visual BI, BSC & Blockchain etc must be promoted here
[10/08, 10:44] RB: This is our nabh accredited hospital 👇
And this is our showcased EMR after deidentification 👇
[10/08, 10:54] SB: Now you see why I am so vehemently opposed to “free” stuff like FOSS? You pay peanuts, you get monkeys. And a one-way ticket to massive, fines, prison time, loss of business and a good life ruined. It’s your life anyway, so I can only shake my head in disbelief and walk away. Voilà!
[10/08, 11:07] AB: I am guessing all those who have used foss solutions like gnu health, Bahmni, openmrs, openehr all went to jail
[10/08, 11:28] AB: Chamberlain forceps! 150 years of keeping simple tech, inaccessible and proprietary away from people - nobody went to jail.
[10/08, 11:45] SB: They might soon have to. Didn’t you attend the DPDP Act webinar by NRCeS last evening?
[10/08, 11:45] SB: You’re missing the point
[10/08, 11:51]AyI: DPDT : FOSS
didn't get the connect Sir
[10/08, 11:52] AB: Yes. quite familiar with DPDP. In fact, was part of a team from IDHN that sent out a comprehensive response https://www.idhnet.org/
[10/08, 11:58] AB: the PDF link seems to be broken - you can see the doc from here - https://
[10/08, 11:59] AB: and this is the Health data management policy from ABDM - https://abdm.gov.in:8081/
[10/08, 13:04] SB: Tell me, are you a medical doctor?
[10/08, 13:06] AB: no. why?
[10/08, 13:19] SB: Then you have absolutely no clue as to what you’re talking about.
[10/08, 13:20] AB: in that response? Sir, please check the list of people who responded. It was collaborative effort and peer reviewed first. Am sure you recognize some of them! I am guessing they have no clue as well?
[10/08, 13:23] AB: If you can point out anything that I have said without a clue, maybe I can learn and educate myself. if not, should I assume its more of "ego" thing? I don't go lecture people on clinical protocol. but I do know about a little bit about technology! Anyways if its about "ego" - then I see no point to respond. Apologies in advance
[10/08, 13:29] SB: I was expecting this reply. How utterly predictable! As I said… you can never understand. Only a medical doctor who deals or has dealt with having a person’s inner most secrets confided to him/her and has taken decisions in a split second that made the difference between life and death, it’s just not possible to understand the criticality of ethical principles and practices. We have a very important duty _primum non nocere_. Unless compelled, no medical professional in their right senses will ever touch any FOSS solution for their day to day practice. And when anyone gets into any legal entanglements and suffers the consequences, bye bye any business from that solution.
[10/08, 13:53] AB: No sir, I don't understand. I know I said I will not respond if you can't provide me evidence, as I would assume it be for some other reason. Having said that - the list of limited FOSS that I shared earlier, is used across thousands of facilities across 100s of countries, in some of the biggest in underserved regions, used in clinical trials, used by the largest humanitarian healthcare services in the world ... I am guessing you have very low opinions about them, or think they were compelled/forced/biased. And in many many cases, they have super competent legal counsels. (although I still can't understand relation of DPDP or legal entanglements specific to FOSS and absolved by COTS). I rest my case Sir. (Since you knew what my reply was to be, I am guessing you are "antaryami" and probably also know in advance this reponse)
[10/08, 14:57] SB: I will discuss this and hopefully lots more face to face. If you’re in Delhi-NCR, ping me. We’ll have a jaw over lunch. 🙂
[10/08, 15:03] Ay: Can we bet on the match? 🙂
[10/08, 15:03] AB: Happy to have rational/ logical discussion. But I love my jaw 🙂
[10/08, 16:19] SB: Having “a jaw over a meal” means having a conversation over meal.
[10/08, 16:24] SB: Duel? Nope. It will be a rational debate, much more civilised than that goes on in the various legislatures of the country.
Group discussion 3:
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