Summary:
There are many instances of inappropriate patient data sharing in social media and this hints at a need to incorporate a special hands on training for health professional and patient users. In the conversational transcripts below an existent experiential training in the form of an elective program for both health professionals and patient advocates is highlighted with adequate links on the theory behind the endeavour as well as videos of hands on demos.
In the second set of conversational transcripts, there's a debate on how patients themselves trade off their privacy in desperation for financial or any kind of support in their health care journey and finally there's a recent experiential sharing of a workshop detailing how collective medical cognition in an integrative participatory medicine format can be foundational to medical education and practice in ensuring ethical guard rails in global healthcare workflows.
Keywords: User driven learning, community ontology, participatory medicine, patient privacy trade offs
UDLCO Keyword glossary:
Introduction:
The popularization of the World Wide Web supported growing interest in participatory medicine through providing access to information in new ways and by different people, and new forms of shared information [79]. https://www.
Methodology:
This was a qualitative study design utilising an interpretative descriptive framework that has been described previously in detail here: https://pubmed.ncbi.nlm.
Global data around the main theme of participatory medicine and privacy was captured from multiple online spaces through online user driven learning that were made into community ontologies (UDLCO). These techniques have been previously described here by us and others as referenced below:
Other than online global data, offline local data was captured in the form of organized face to face participatory medicine meetings between multiple stakeholders in the healthcare ecosystem. Hyperlocal data captured as part of a regular workflow of our user driven healthcare project using the PaJR and CBBLE tools were captured from respective online platforms made available for the same.
RESULTS
Results in raw qualitative multimodal data in textual conversational transcripts, clinical images and videos of real patient participatory events:
online global data captured from online global discussion fora as UDLCOs
offline local data captured in the form of organized face to face participatory medicine meetings between multiple stakeholders in the healthcare ecosystem.
Hyperlocal data captured as part of a regular workflow of our user driven healthcare project using the PaJR and CBBLE tools
ONLINE GLOBAL discussion data:
1) Conversational UDLCO Transcripts in a medical education group around training doctors on effective and safe use of social media by spotting the guard rails:
[30/11, 18:09] Prof Meu: Digital professionalism awareness necessary...
I am not giving NMC ideas...else they will make a module and instruct teaching right from year 1
🙏🙏
[30/11, 20:27] rb : We teach this hands on both as an elective and also for any student who works with our team and our real patients toward experiential learning.
It begins with their understanding the informed consent form which sometimes needs supplementation with a video consent 👇
We shouldn't forget that whatever we study today as medical science has been extracted as data from real individual patients who traded off bits and pieces of themselves (their individual information and not just their physical bodies for transplant or the dissection table) as their valuable contribution to science and not training our students in how to do this properly is itself a crime.
Past UDLCOs around this topic:
Conversational UDLCO Transcripts from another group highlighting patient trade offs and the differences between desperation and compulsion as well as vulnerability:
The conversations begin after one of the users shares an image revealing a patient's picture apparently shared by the family to get financial support toward their further care.
Similar public links that often are displayed as social media ads that users may have often encountered:
One can also go to Facebook and type ketto to find 1000 such posts driven by patients and their family users of this social media driven fund sourcing platform where sharing personal details appear to be mandatory and you can find thousands of such patient trade offs to gather financial support and it may be actually quite difficult to trace the real outcomes of such trade offs in terms of the same patient's illness recovery outcomes although not impossible if one has the resources to take up such a project.
Here's the bottom-line stance hosted in the ketto site itself and to quote:
"Crowdfunding helps researchers focus their efforts on specific diseases and gives patients hope that they will one day be free from their illness. Once people get behind a cause and make it their own, they are much more likely to donate money now rather than later when it matters most."
Unquoted and accessible from: https://www.ketto.org/
UDLCO begins with:
IMAGE OF PATIENT with an appeal to donate:
[13/11, 17:25] OP user: Forwarding message for spouse of ... colleague - MR ... I did my bit of donation. Request all to support 🙏 Attached
[13/11, 17:27] BR: THIS IS NOT RIGHT PLATFORM FOR THOSE ACTIVITIES
[13/11, 17:27] BR: PLEASE DELETE IT WITH IMMEDIATE EFFECT
[13/11, 17:58] OP user: Dear sir, It is a genuine case and trying assist a colleague in severe distress.
Kindly ignore the message if you are not connecting to it.
This is large group of gentleman and ladies who are doing wonderful work for our country.
A little help to an individual will go long way.
Hence pardon my position for once , I won’t be deleting the post . 🙏
[13/11, 18:44] BR: No issue at all, I am just directing you to the rule book
[13/11, 18:45] BR: this group will then be flooded by all those donation requests, as this group representing at least 250 Organisation with average 50 K employees and millions ex employees
[13/11, 20:08]: Trying to leverage this post to make a health IT relevant point about patient confidentiality and privacy:
Notice how patient privacy gets traded off in the hope of better interventions and outcome.
Similarly patients are regularly trading off their privacy with their doctors to develop a better relationship with them only in the hope of better outcomes for themselves.
This subtle undercurrent needs to be weighed into consideration while framing privacy laws?
[13/11, 20:13] +91A: Well said....
Patients and there relatives can go to any extend for a better outcome..
We still use open post cards...
[13/11, 20:53] AN : I do respect and advocate privacy but it is always a trade off. My personal opinion is that the data privacy was never a concern of a common man. His worry is accessibility of Care at an affordable price. If that is not met he doesn't care about the privacy as evident from the above outcry for help in the public domain. Privacy is a concern for a common man in India only when there is a social stigma associated with the condition. ( HIV, infertility etc )
Celebrities and VIPs on the other hand want everything about them to be super private. Why do we generalise this and impose on everyone? Let there be only a few hospitals that are ultra sensitive to privacy, where celebrities will get treated at a price only they can afford. Trust hospitals may not spend exorbitantly on those processes and will offer Care where availability and affordability is placed above privacy.
Like in the case of banking very few have peculiar preference for the privacy and then they go to Switzerland. But not everyone needs to follow Swiss banking practices!
[13/11, 21:11] rb: Recall having had this conversation with you and KS in a restaurant near Mumbai way back in 2008 when we were on our way to a conference from Mumbai to Baramati!
[13/11, 21:18] AN: Intel India sponsored event if I remember correctly.
[13/11, 21:23] AN: Thanks to @~AB
[13/11, 21:54] A: Where is AB..?
[14/11, 00:54] AC: Nice points.
Desperation vs compulsion - which is the greater evil, maybe that's what one needs to ask.
Most of our arguments against privacy are those arising out of desperate situations. If a dear one can be saved at the cost of loss of privacy - so be it.
Is honour worth it when survival is at stake - what is one willing to sell?
Then what is compulsion. Maybe when the law mandates something! It could also be a compulsion of basic necessities.
Without offence to anyone, "loss of privacy is capitalistically lucrative"! (For want of decorum I will not share what this implies)
No, I am not trying to make a larger demon of capitalism than we ought to. But we do need to have open public debates on where the ethical lines must be drawn.
[14/11, 01:05] AC: Continuing from above...
Maybe a simple rule of thumb could be the delineation between desperation vs compulsion in such scenarios.
An act of desperation, such as causing harm in self defence is usually condoned both socially and legally.
If it's a compulsion, such as being compelled to bring down curtains of privacy that definitely is unethical.
The challenge lies in documenting compulsion, hence even desperation is denied.
[14/11, 08:13] rb : Well elucidated 👏👏
Much needed counter to triangulate this amazing and long overdue discussion.
[14/11, 08:14]: 👆The examples from Ketto cited above is desperation
Let's look for examples of compulsion
[14/11, 08:15] AC: Did some literature survey on this yesterday. Looks like the keyword "vulnerability" is where desperation and compulsion have been explored
[14/11, 08:16]rb: Can't ask meta AI to share that literature as it would just make up it's own but if you could share some links we could ask meta to thematically analyse it with it's coding as that is something meta does well enough
[14/11, 09:03] AC: 👆 for instance. The above 2019 paper talks about the two inherent components of vulnerability. My current hypothesis - compulsion can be extraneous and intraneous, while desperation is a unipolar response to external compulsion often cited in jurisprudence as "excruciating circumstances beyond control".
(Will explore this after completing whatever I plan for https://pat.al - essentially Patal is an embodiment of vulnerability but so are the upward lokas. Kaumodini is expected to rule in the ruler, and should address extraneous compulsions. One is left to wonder why such layers of cryptic iconography are needed! )
LOCAL offline event data:
November 28th workshop integrating healthcare professionals and patients (aka technology end users) perspectives with computer science students and faculty from the university of Hyderabad (UoH) to spread awareness around our individual patient precision medicine awareness, education and practice program:
Highlights:
Patient centered demonstration video link shared in social media with a foreword:
In the lecture organized by UoH we also took our 82 year old rural patient of Diabetes who survives on a government pension of 2000/- per month along with his wife.
The UoH authorities had provided a 7 seater car for carrying them along with our PGs all the way from Narketpally around 80 kms to their venue and the audience there gave the patients and our PGs a standing ovation!
However the best part was seeing the patients so happy with the food there at breakfast and lunch which was never anything like what they got to taste before and the organizers ensured they also packed some for them in their return journey!
Wish we can do these patient centered participatory medicine workshops more often!
Participatory medicine session real time video capture link:
Dr Sree Teja https://youtu.be/oG-uV5_6Bf0?feature=shared
Dr Shivani https://youtu.be/tXTNYVfFYnE?feature=shared
Links to the lecture preceding the demo:
Post lecture demo discussion video:
The last demo discussion is particularly relevant as it also discusses a SWOT analysis of our participatory medicine workflow and patient privacy and security threats are likened to the omnipresent thorns in our workflow intertwined with clinical complexity.
The above as well as more notes around the face to face lecture demo is available in the link here: https://
Hyperlocal data:
Other than our archived data of thousands of local patients followed up hyperlocally in our dashboard here: https://
through our regular participatory medicine PaJR workflow as the family was kind enough to consent for her pathological autopsy and this was a rare first event in the history of our two decades old institution.
The autopsy findings were shared in a clinical meeting with our formal learning ecosystem comprising of students and faculty members and as expected adequate care was taken by all participants not to divulge the patient's identity and maintain her privacy and confidentiality during the autopsy as well the clinical meeting which was part of an "NCD intertwined with CD" project published here: https://
Thematic analysis of global, local and hyperlocal data:
Discussion:
Conclusion:
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