Sunday, June 15, 2025

The Indian research ecosystem and importance of regular publishing and communication of one's work

Group conversational Transcripts from 2011:

CBBLE moderator: To add another perspective to 'publications':

There was a researcher in India around 50 years back who got trained from Europe in 'Reproductive Physiology' and after returning to India set about applying his training to develop what could have become the first IVF success story in the world.

His only problem was he had set his eyes on the 'deeper' goal of producing the 'baby' without publishing his 'superficial' findings that led him toward his goals in a step by step manner and each of these original steps were later analyzed as worthy of single papers in "Nature" that would have brought him instant recognition in his field ( and perhaps got him a ticket to be a faculty in a university abroad ) even before he developed the baby.

Although the British team produced the baby first ( a year before his baby came out and was mercilessly rejected by his own countrymen ) his approach to producing the baby was an astounding piece of original creativity and his techniques were rediscovered and popularized a decade or two later by Western researchers. (Current Science, Vol .72. No. 7, 10th april1997

He didn't publish these 'superficial steps' in any journal and finally after reaching his goal published his 'deeper findings' in an Indian journal and after publishing this he perished ( committed suicide ) for being violently rejected as a 'fraud' by the Indian scientific community. This story has been portrayed with a different research setting around 20 years years back in a bollywood movie 'ek doctor ki maut,' although understandably bollywood didn't touch on this particular aspect about publication.

conflict of interest COI: He studied in the same medical college as me and we do not have anything else in common. :-(

The bottom line/learning point here could be :

Keep documenting whatever we do in research and start sharing them globally ( which is what publications are all about) unless we want to perish? It is like working toward eating an entire piece of flesh over the week by slicing it into one 'salami' a day?

regards,



From: Gitanjali Batmanabane
Date: Wed, Apr 13, 2011 at 9:52 AM
Subject: Re: [netrum] scientific fraud in writing - 2
 

Dear Netrumians
 
Just to add that all of these listed by Vijay cannot be labelled 'scientific fraud' in the strict sense of the term.
 
For e.g. Salami slicing - this is unethical but many people resort to this. Editors accept the manuscript because there is no way of knowing whether it is a part of the study which was published before (and there is nothing unethical about that). Funding agencies like it because the measure of the success of a project lies in the number of papers published. For e.g. if you conduct a survey of antimicrobial use in public, private hospitals and elsewhere (community) but when publishing - publish one manuscript on use in public hospital, one on private hospital, one on community use and so on. The issue with salami slicing is that most authors justify it and of course it adds to the numbers of papers in the CV. The issue here is that the whole topic becomes so superficial when published. Imagine if someone publishes a paper with all three aspects together - there will be depth and readers will have a good overview of things. Sadly this is never thought of. Many PhD theses get sliced only because the authors want to increase the 'n'. Those of you who read papers published in Journal of Pharmacology & Experimental Therapeutics will understand what I mean. Most papers in that journal are a pleasure to read (and very difficult to understand) because they fully investigate the research question.
 
So salami slicing falls into a grey area.
 
Gitanjali
 


On Wed, Apr 13, 2011 at 4:05 AM, Arin Basu wrote:
 

Vijay sir has posted a very interesting list of scientific fraud in writing in this forum. I'd like to pick up three of them -- selective reporting as scientific fraud, salami slicing of reports, and omission of others' original publications - and post my observations and feelings. I think each of the three is an example of academic dishonesty but there is a deeper societal and cultural systemic basis in each one. I also think using "fraud" to label them as such is too strong a term to use. The reason I think fraud is too strong a term for this set, is in the complexity around each of these, and how people are sometimes compelled under circumstances. 


Take subgroup analysis for example (See Vijay sir's listing "Reporting only the findings that support the original hypothesis." as fraud. )
I think there is a fine line between academic pragmatism, dishonesty, and fraud, let's leave at that. On the surface of it, reporting only those data that support the hypotheses seem like fraud (although I'd think it's too strong a word, I'd rather go for "dishonesty" or something similar expressive). I htink these issues merit discussion here. In particular when is selective reporting dishonesty versus when it is not.

There are situations where the investigators have set out rival hypotheses, gone about data collection in as unbiased a manner as possible, and then have analyzed their data. In doing so, they realize that data in general support their hypotheses and while writing up their publication from the project, would deliberately highlight those points that support their hypotheses. That's straightforward, and most people would not count that as dishonest practices. 

However, problems arise when people cut some slack on their data, or report justifiable claims of their hypothesis on the basis of subgroup analyses.  For a good discussion of the publication bias and other problems that arise (goes beyond moral obligations of the researcher or the author, and plagiarism charges), see Rifai et al,Reporting Bias in Diagnostic and Prognostic Studies: time for action, full text here (http://www.clinchem.org/cgi/content/full/54/7/1101)

As you see, these are systemic problems inherent in the culture of academics that people have come to accept and grow on. These are problems that need to be addressed from a range of different perspectives, as educators, we need to remember that it is the study quality (rather than the precise results) that are important; that p-value does not really tell you anything other the probability of your findings under conditions of the null and that's that; that there is no such thing as "positive" or "negative" studies. There is also a need for registry for all kinds of studies for all countries, or a common database. 



Similar situations arise when you consider salami slicing of your reports. By salami slicing is meant where you do repeated analysis of the same data, develop different messages out of them package them as publications and get credit for separate publications. In reality, you could have written up all of them in one paper and be done with. Is this dishonesty? Well, yes and no, depending on whose perspective you consider. From an academic knowldege management perspective, it borders on stacking up your plate whereas one paper would do; if you ask the investigator, he or she will justify that each message is vitally important in its own merit, and that any number of messages can be collapsed into one paper, but does that happen all the time? Plus, add to it, the system wants you be more productive and write more papers. Where are the data going to come from? One data, several different messages. The grantor organizations want you to be productive in that, buck for buck, you need to have as much productivity for one project, there is the "culture" of "publish or perish", and indeed, in an academic sense, who'd like to remove oneself from the academic gene pool of excellence and ladder climbing? Add to that the complexity of peer review process and it's no wonder that people would like to cut their data too thin to send to as many journals as possible and hope to get published. One side of the multiple comparison problem in academic data analysis. 

Is there a way out? Once again, I think it's a systemic issue. There are now multiple channels of academic publishing (of course in biomedical sciences we are a little slow to adapt whereas physics and math people are way ahead with their prepublication archives like ArXiv and so on). There are channels such as blogs and wikis and each is a good way to express your papers. Can we not build an academic knowldege base around them? Must we have peer review processes? For a good discussion, search for Richard Smith [AU] and peer review. Here's a sharp criticism of some problems plaguing our culture of publications in science (perhaps from a biomedical perspective), here by Jet Akst "I hate your paper", http://www.the-scientist.com/templates/trackable/display/article1.jsp?a_day=1&index=1&year=2010&page=36&month=8&o_url=2010/8/1/36/1
It of course talks of the peer review system, but you get the idea. 

The third thing is about lack of citing previous research perceived as academic fraud. And again, I do not know anymore if it is a fraud or if it is dishonesty, or if it is just pragmatism, or jealousy, or not wiling to issue the credit where it's due, or ego clash, or claims, or what it is. At the least, it's irritating. But most discerning readers do find out about these things anyway. Isn't it systemic? You bet. In an environment, where funds are tight, there is intense competition among rival groups working on the same project(s), it is not unusual to see people NOT citing one another and willing to give credit. Dishonesty? Yes, most certainly is. But I also think it's ingrained in our culture where we are hesitant to applaud others (not all are like that, but for many of us, openly applauding others for work that they have done does not come naturally; As Amzad Ali Khan, the famous saradiya, once lamented, he found his desi audience to be too miserly in clapping). Again, issues are ingrained in our culture, in our system, in our psyche. 

My point here is that, whether it is selective reporting on the basis of subgroup analysis (or other strategies), whether it is salami slicing of data, or wilful resistance to cite other peer groups, each of these is a symptom of a deeper systemic issue ingrained in our culture, be it academic, be it otherwise a generic social issue. Of course, that is not to take away any blame from the reporter/student/researcher. My point is this, issuing a warning is not enough under the circumstances. There is now also a case to strengthen the structure and influence the mindset of the students/early career researchers/funders to alert them about the perils of moral crises. 

# :-), my two cents

# /Arin 




 

https://commons.m.wikimedia.org/wiki/File:InVitroFertilization.jpg

More: https://en.wikipedia.org/wiki/In_vitro_fertilisation


https://en.wikipedia.org/wiki/Subhash_Mukhopadhyay_(physician)

Friday, June 6, 2025

Shooting from the hat with AI driven precision and accuracy to understand reliability and validity: UDLCO CRH





Conversational Transcripts:


[06/06, 09:18]AY: See the beauty of AI's language, where it constructs the sentence "Experts know what they don't know"


[06/06, 09:56]cm: Knowing what's unknown is the crux of "Meta cognition"?



[06/06, 11:19]ay: How do you guarantee validity (val idi _iti_) of a PaJR?


[06/06, 11:27]cm: The word validity is etymologically derived from the Latin validus meaning strength which uses the Sanskrit root Val aka Bal or in Bengali Ball!

So validity is in a way "might is right!"


[06/06, 11:28]ay: And idi

What about iti? 😃

Iti is Sanskrit and derived.

Choose idi from whatever is normatively cognate


[06/06, 11:29]cm: Eta ota

Iti is shesh


[06/06, 11:30]ay: Will tackle this over the weekend 🙂


[06/06, 11:32]cm: In Western theory of research evidence generation, the concept of the power of a study often determines the bal (validity) of the study but unfortunately study power itself currently probably is simply restricted to sample size?

Perhaps something more about this can be worked out over the weekend?


[06/06, 11:33]ay: That's because our (geolocated and geotagged linguaphonetically) research often reaches the waste urn!


[06/06, 12:31]si: Nice representation of validity & reliability: 




[06/06, 16:07]cm: The same is used as diagrammatic markers for precision and accuracy!





Does that mean precision medicine is all about reliability and not so much about accuracy and perfect medicine could be about both?



[06/06, 18:09]ay: 😭 this is not what and how we teach shooting. 

Grouping is important. It's Valid! 

All that is needed is a minor adjustment of "sights".

PS: Grouping is accuracy and precision combined.

Accuracy is of the posture and breath, and precision is of "sighting" and reaction.


[06/06, 18:19]ay: How AI explains it...

The infographic labelling tight groupings offset from the bullseye as “high precision but low accuracy” may be visually appealing but is conceptually misleading, especially when applied to research. In reality, tight groupings indicate both control and consistency—hallmarks of sound method and trained execution. If the shots are consistently clustered, the issue is not with accuracy of posture or breath (i.e., the research design and methodology), but with the sight alignment—akin to a minor misalignment in hypothesis framing or measurement scale. Dismissing such groupings as "inaccurate" is analogous to rejecting nuanced, repeatable research outcomes simply because they don’t conform to a pre-assumed center—often a stereotype or oversimplified standard. It mirrors the problematic practice of discarding data as “outliers” when in fact they may reflect expertise navigating edge cases or reveal important deviations. True accuracy emerges from refining the aim, not questioning the shooter’s competence when they’re grouping tight. Let’s not confuse deviation from norm with deficiency in method.


Sunday, April 20, 2025

PaJR step by step intiation after web based single click entry into the current PaJR WhatsApp welcome group

For those joining in here and wondering what's the next step to their getting PaJRed:


Initiation to PaJR step by step:

[17/04, 22:20] CBBLE Patient Advocate: Sir would you look after this case please?

[17/04, 22:31] CBBLE Patient Advocate: She is a very intelligent and extraordinary child. The medication she is having for years seems to cause a lot of side effects. 
Her parents had sent me all the de-identified reports, I can send you if you need or if a WhatsApp group is created, her parents can send everything there themselves.

[18/04, 07:17]cm: Will be a pleasure.

Please ask the parents to download this: https://medicinedepartment.blogspot.com/2025/02/informed-patient-consent-and.html?m=1 consent form, read it and sign it in the language of their choice along with their full addresses and mobile phone numbers following which we shall create her PaJR group and start interacting with them as well as our other team members there around her problems to find the best possible evidence based solut

2) Please become your own patient's advocate and share your patient's problems in the following format below taking extreme care not to reveal any identifiers of the patient of his her treating team.

3) Also,

Please describe your patient's sequence of events that led to the current problems. Please begin the sequence of events from the time your patient had absolutely no problems at all. 

Please describe your patient's hourly  routine over 24 hours when he was perfectly alright 

Next please describe what happened to his hourly 24 hour routine once the disease took hold on his life 

Please mention specifically which part of the patient's hourly routine was disrupted 

What are the patient's current requirements from us like if we had to give him a single medicine which problem would they prefer it to address?

Please post the patient's clinical photo of abdomen and arm muscle as demonstrated below in the image here:



Some examples of a PaJR patient's hourly activities:

PaJR involves daily sharing of energy Inputs and outputs from all our patients globally. More here: https://www.researchgate.net/publication/314328348_Patient_Journey_Record_Systems_PaJR_for_Preventing_Ambulatory_Care_Sensitive_Conditions


CUBE home lab Sunday PaJR patient hourly activities to expiate for metabolic syn:

7:00AM-8:00AM after walking the dogs and a little bit of Web 2.0 finger typing

It's time to transfer the dragon fruit cacti to a bigger pot and to set the stage PaJR patient transferred some compost and soil from elsewhere to the new location where it would be repotted. (Pics attached)

Initially tried lifting the soil bags to directly overturn it into the bucket, which was good for the arm muscles but when that didn't work , had to scrape them out with the hands and transfer to the bucket. Good workout for the forearm muscles!

Chopped a bush of Hamelia Patens that was nearly touching the roof and blocking the Sun for the mulberry (pics attached)

Also transferred a large pot from one garden location to another (pic attached).

Finally some more forearm muscle micro exercise trying to de seed these seeded dates (pic attached). 

As a result of the above activity, the picture that apparently resembles a PaJR food plate energy input  is actually a representation of some PaJR micro energy output!



8:00 AM to 9:00 AM PaJR patient activities video: https://youtu.be/V4eZQ5Hi38A?feature=shared

[18/05, 19:37] cm: What about the sequential timelined history in your patient?
[18/05, 19:46] +91: Is there an example format for history we can look at?

[18/05, 20:31]cm: Short history (detailed one below this): 1. The patient has tingling and numbness of lower limbs since 10yrs extending from tip of toes to shin of tibia. 2. Burning sensation of feet since 5yrs. 3. Chest pain since 4 days, pricking type on and off. No precipitating factors. 4. Loose stools for one day which was one week back and subsided with medication. Has Diabetes on injection Mixtard 20U BBF, 15U BD since 30 years Had kidney problem since 13yrs. Known case of Heart failure 2° to coronary artery disease since one month. History of stable angina, one month back. Detailed history: An 80- year- old male , born and raised in a middle- class family, had a father who practiced as an Ayurvedic doctor, treating people with herbal medications. He grew up with two elder sisters, one younger sister, and a younger brother. In his early years, he experienced the tragic loss of his eldest sister to Hansen's disease. A few years later, his second elder sister passed away after using herbal medications for suspected cancer. After his father's death from a brain stroke, financial hardships forced him to leave school. To support his family, he began working in handlooms while attending night school. The loss of his sisters motivated him to pursue a career in medicine and follow in his father's footsteps. He got married in 1962. Later, his younger sister was also diagnosed with Hansen's disease. After her husband abandoned her, he and his wife took full responsibility for her care until her death. His younger brother, who was diagnosed with Hansen's disease at the age of six, also passed away eight years ago. At one point, he purchased a power loom from Bombay and earned a living through it. However, over time, his neighbors also acquired similar looms, leading to increased competition and a decline in customers, which affected his financial stability. He has four daughters, all of whom are now married. Fifteen years ago, when his elder sister was diagnosed with diabetes, he decided to get a health check-up. Initially he managed his condition through dietary changes. A few years later, he began experiencing tingling and numbness in both feet. After consulting at NIMS, he was diagnosed with hypertension, diabetes, and peripheral neuropathy. Since then, he has been on conservative management. Full PaJR case report: https://pajrcasereporter.blogspot.com/2024/10/80m-diabetes-hypertension-30yrs-ckd.html?m=1




Book proposal introduction to Medical Cognition: Web 2.0-3.0

Thanks for your valuable feedback around topics that we associate with what we label as medical cognition and it would be a pleasure to invite you to join our book writing team on a book titled, "Medical cognition Web 2.0-3.0 where we are currently drafting a proposal for Cambridge publishers.


Below are a few links to text and podcasts to Medical Cognition and its evolution from Web 0.0 to Web 3.0 including one around our previous book on Medical Cognition Web 2.0

Podcasts:

Medical Cognition 1.0


Medical Cognition 2.0:


Medical Cognition 3.0:




Our previous book linked above was on integrating medical education and practice in the times of Web 2.0

This next book we are proposing is all about integrating medical education and practice in the current Web 3.0 era that's growing exponentially by leaps and bounds and may not remain bound by paper volumes!

Can this result in a playbook that anyone can implement in their hospital?

Areas that can be covered in the book (in no particular order, each could be a chapter) - 

1. Single case trials / pragmatic trials (how multiple disconnected single case journeys lead to insights about a new case)

2. Unraveling of complex medical cases (imaginary pillow et al)

3. Pedagogical tool (for PG students)

4. Participatory medicine (where patient, advocate, doctor, experts, enthusiasts are all participating in the patient's recovery; everyone at KIMS contributes to a fund for patients)

5. Transparent, evidence based medicine (papers shared, discussions in front of patient)

6. Technology used (Meta AI, food shot auto recognition, AI evaluation, handwriting reading, summarisation, chronological restructuring, etc)

7. Crowdsourced (patient sent) data (readings, food plates, tests, other doctor opinions, internet findings, self experiments)

8. Getting over the urban-rural, language, socio-economico divide (multi-lingual whatsapp chats, patients abruptly leaving groups not understanding the english, keeping socio economic conditions in mind when prescribing more tests)

9. The open source, open access, responsible way (ensuring everything is anon

Below is the current outline part of the book content in our proposal but feel free to add and mold it.

Medical Cognition: From Web 2.0 to Web 3.0 - A Playbook for Hospitals and Medical Professionals


Part 1: Understanding the Foundations - Medical Cognition in the Web 2.0 Era


Chapter 1: The Evolution of Medical Cognition:
Traditional doctor-centric models of medical thinking.
The emergence of participatory medicine and user-driven healthcare in the Web 2.0 era.
The role of online patient portals, telehealth, and early social networks in healthcare (e-healthcare, Health 2.0).
The shift towards patient empowerment and collaborative care models.
Introduction to narrative medicine and the importance of individual patient stories.
Limitations of Web 2.0 in fully leveraging patient-generated knowledge.

Chapter 2: Key Concepts of Web 2.0 Participatory Medicine:
In-depth explanation of Patient Journey Records (PaJRs): de-identified case reports including clinical history and patient narratives as a foundation for learning.
Understanding Case-Based Blended Learning Ecosystems (CBBLE): digital platforms for global collaborative learning and discussion around PaJRs.
Introduction to Critical Realist (CR): a framework for critical analysis and deeper understanding of complex healthcare situations by combining self-directed learning with critical realism to uncover underlying mechanisms.
The concept of "learning globally to act locally" within CBBLE.


Part 2: The Paradigm Shift - Embracing Medical Cognition 3.0


Chapter 3: The Dawn of Web 3.0 in Healthcare:
Defining Web 3.0 and its core characteristics (decentralization, open access, user ownership, semantic web, AI integration) [Not directly from sources but inferred].

How Web 3.0 technologies (e.g., blockchain, agentic AI, registries, Digital Public Infrastructure, semantic knowledge graphs) can address the limitations of Web 2.0 in medical cognition
The potential for a more decentralized, participatory, recursive ecosystem for learning and care.
The role of community ontologies (UDLCO) as organized, reusable knowledge structures readable by both humans and machines.

Chapter 4: The 10X Value Proposition: How Web 3.0 Enhances Medical Cognition:
Enhanced Knowledge Discovery:
Web 2.0: Manual analysis of PaJRs and discussions within CBBLE.
Web 3.0: AI-driven analysis of structured UDLCOs to identify complex patterns and causal pathways across a vast number of cases with greater speed and accuracy.

Example: Identifying subtle early indicators of rare diseases by cross-referencing nuanced patient narratives within UDLCOs that would be missed in manual analysis of Web 2.0 data.

Hyperlocal-Personalized Medicine:

Web 2.0: Contextual understanding through individual case reviews.

Web 3.0: AI leveraging UDLCOs to understand the interconnectedness of individual patient data (multi-modal data) with a broader knowledge base, leading to highly tailored diagnostic and treatment approaches.

Example: AI suggesting personalized treatment modifications based on UDLCO-derived insights into how patients with similar complex co-morbidities responded to various interventions, going beyond standard clinical guidelines.

Accelerated Learning and Knowledge Sharing:

Web 2.0: Collaborative learning through CBBLE discussions, which can be time-consuming.

Web 3.0: Instant access to a dynamic, machine-readable knowledge base (UDLCOs) that synthesizes insights from countless cases and expert analyses, facilitating rapid knowledge dissemination and application.

Example: A junior doctor in a rural setting instantly accessing UDLCOs related to a rare presentation, providing synthesized insights and potential diagnostic pathways based on the collective experience captured and structured within the system.


Improved Decision Support:

Web 2.0: Clinician-driven interpretation of data and guidelines.

Web 3.0: AI-powered decision support systems that leverage UDLCOs to provide context-aware recommendations, considering the nuances of individual patient journeys and emergent patterns.

Example: An AI system suggesting alternative diagnostic possibilities for a patient with atypical symptoms based on patterns identified in UDLCOs from seemingly unrelated cases that share underlying contextual factors (e.g., environmental exposures, behavioral predispositions).

Democratization of Medical Knowledge:

Web 2.0: Increased patient access to information, but often unstructured and potentially overwhelming.
Web 3.0: Structured, contextually rich UDLCOs making complex medical knowledge more accessible and understandable for both patients and professionals, fostering shared decision-making.
Example: Patients with chronic conditions accessing UDLCOs related to their disease to gain a deeper understanding of different treatment pathways, potential long-term effects, and patient-reported outcomes, enabling more informed discussions with their healthcare providers.



Part 3: Implementing Medical Cognition 3.0 - A Practical Playbook


Chapter 5: Setting the Stage - Building Your Foundation:
Establishing a culture of participatory medicine and narrative capture.
Implementing systems for secure and consented collection of PaJRs (leveraging existing EMR systems and patient-facing platforms).
Creating and managing CBBLE groups focused on specific medical specialties or complex cases.
Training medical professionals on the principles of narrative medicine and active listening.
Ensuring data de-identification and ethical considerations.

Chapter 6: Building the Knowledge Ecosystem - Creating UDLCOs:
Developing standardized templates and protocols for structuring insights derived from PaJRs and CBBLE discussions.
Utilizing semantic web technologies and AI tools for automated extraction and structuring of knowledge into UDLCOs.
Establishing governance and curation processes for UDLCOs to ensure accuracy and relevance.



Strategies for linking UDLCOs to existing medical ontologies and knowledge bases.
Tools and platforms for UDLCO creation and management 

Chapter 7: Integrating Web 3.0 Tools and Technologies:
Leveraging AI for automated analysis of PaJRs and UDLCOs (natural language processing, machine learning, knowledge graph construction).
Exploring the potential of blockchain for secure and transparent data sharing and management of UDLCOs [Inferred].
Integrating UDLCOs with clinical decision support systems and EMR platforms.
Developing user-friendly interfaces for accessing and querying UDLCOs for clinicians and potentially patients.
Addressing technical challenges and interoperability issues.



Part 4: Measuring Success and Continuous Improvement


Chapter 8: Rubrics for Evaluating Implementation Success:
PaJR Contribution Metrics:
Number and quality of PaJRs submitted by clinicians and potentially patients.
Diversity of cases captured (specialties, complexity, patient demographics).
Completeness and richness of narratives within PaJRs.
CBBLE Engagement Metrics:
Level of participation in CBBLE discussions (number of posts, threads, expert engagement).
Quality of insights and critical analysis within discussions.
Evidence of "learning globally to act locally" – application of shared knowledge in local clinical practice.
UDLCO Creation and Utilization Metrics:
Number of structured UDLCOs created and curated.
Frequency of UDLCO access and utilization by clinicians and AI systems.
Impact of UDLCO-derived insights on diagnostic accuracy, treatment decisions, and patient outcomes (measured through audits and outcome studies).
Web 3.0 Tool Integration Metrics:
Successful integration of AI and other Web 3.0 technologies with existing systems.
User adoption rates of new tools and platforms.
Efficiency gains in knowledge discovery and decision support.


Qualitative Feedback:
Surveys and interviews with clinicians and patients to assess the perceived value and impact of the implemented system on medical cognition and patient care.
Analysis of case studies showcasing breakthroughs or improved outcomes attributed to the Web 3.0 approach.

Chapter 9: Fostering a Culture of Continuous Improvement:
Establishing feedback mechanisms for refining PaJR collection, CBBLE engagement, and UDLCO development.
Regularly evaluating the impact of the implemented system on key performance indicators (e.g., diagnostic accuracy, time to diagnosis, treatment effectiveness, patient satisfaction).
Encouraging ongoing research and innovation in leveraging Web 3.0 for medical cognition.

Adapting the playbook based on learnings and emerging best practices.

Conclusion: The Future of Medical Cognition - A Collaborative and Intelligent Ecosystem


Wednesday, April 9, 2025

UDLCO CRH: Advanced epithelial ovarian cancer neoadjuvant chemotherapy efficacy and also how commonly is it done without tissue diagnosis only blood tumor markers and CT imaging

 

[09/04, 07:21]: Neoadjuvant chemotherapy prior to cytoreductive surgery is a treatment option in selected patients with advanced EOC. Clinical, routine serial CA-125 assessments and CT serve as the mainstay for response assessment during this therapy. CT is usually performed as a baseline study and after 3 cycles of chemotherapy to determine eligibility for cytoreductive surgery. Alternatively, in insufficient response, medical treatment is continued.



[09/04, 07:29]: Question for oncology practitioners or enthusiasts:

How common is it to start neoadjuvant chemotherapy without any tissue diagnosis but solely depend on CT staging and tumor markers for apparently advanced (on the basis of CT and tumor markers) epithelial ovarian carcinoma?


[09/04, 07:31] : The methodology of the original trial recommending neoadjuvant chemotherapy in similar situations suggests that they recruited:

"Eligible patients who had biopsy-proven stage IIIC or IV invasive epithelial ovarian carcinoma, primary peritoneal carcinoma, or fallopian-tube carcinoma. If a biopsy specimen was not available, a fine-needle aspirate showing an adenocarcinoma was acceptable under the following conditions: the presence of a pelvic (ovarian) mass."


Have the recommendations changed after that and is a tissue diagnosis not necessary?


[09/04, 08:04] : After that 2010 nejm landmark RCT there's been multiple reviews and re-evaluations of the neoadjuvant chemotherapy NACT approach and the problems pointed out are inability to visualise and assess the tumor and it's spread properly during interval debulking but again I couldn't find if NACT was common without a tissue diagnosis but just based on CT imaging and peripheral blood tumor markers alone



[09/04, 08:17] : A recent 2025 Cochrane review may dampen the enthusiasm for NACT as it shows there is likely little or no difference in primary survival outcomes between primary cytoreductive surgery (PCRS ) and NACT for those with advanced EOC who are suitable for either treatment option. NACT reduces the risk of postoperative mortality and likely reduces the risk of serious adverse events, especially those around the time of (PCRS) surgery, and the need for stoma formation. https://pubmed.ncbi.nlm.nih.gov/39927569/


[09/04, 08:44]: Bottom-line for TLDR people:

Although my original question remains unanswered with one center study coming remotely close to answering it, with "Between 1994 and 2007, 149 patients were identified. Initial diagnosis was made on the basis of: cytology (paracentesis, thoracentesis, or fine needle aspirate) 72% (108 patients); histology (core biopsy, surgery) 18% (26), clinical (Radiology and CA-125) 10% (15). The final diagnosis was consistent with invasive EOC in 96% of patients. The diagnostic accuracies of the 3 strategies were: cytology 98%, histology 92%, and clinical 87%, (p=0.04). https://pubmed.ncbi.nlm.nih.gov/20591472/
the above suggesting that 2 patients out of 15 given NACT with just tumor markers and CT imaging could have had an inaccurate diagnosis and given the overall low survival rate of both PCRS and NACT, I am now wondering (perhaps like Steve Jobs) about how much worse or better could it be if we did none of these (NACT or PCRS) and simply resorted to palliative therapy in advanced EOC? 

Now can we find any comparative studies with palliative care (doing nothing other than symptomatic relief) vs the usual PCRS and NACT care that appears to be the current usual care?





Thursday, April 3, 2025

The Lung puzzle - unraveling the enigma of recurrent respiratory infections

The Lung puzzle - unraveling the enigma of recurrent respiratory infections


Medical history-


A 56-year-old homemaker from Hyderabad presented with a complex medical history spanning over a decade. 

Her medical journey began in 2009 when she was diagnosed with pulmonary tuberculosis (TB) and treated with anti-tubercular therapy (ATT) for 6 months


Initial Diagnosis and Treatment (2009)

In 2009, the patient developed symptoms of daily cough with sputum, low-grade evening rise of temperature, and weight loss for 20 days. Her sputum tested positive for Acid-Fast Bacilli (AFB), and a chest X-ray (CXR) showed features of pulmonary Koch's. She was diagnosed with pulmonary TB and started on ATT, which she took for 6 months. Following treatment, her sputum converted to negative, and she remained asymptomatic for the next 10 years.


Relapse and Re-Treatment (2018)

In 2018, at the age of 50, the patient experienced a relapse of symptoms, including cough, fever, and weight loss. Her sputum tested positive for AFB and Cartridge-Based Nucleic Acid Amplification Test (CBNAAT). She was diagnosed with drug-sensitive TB and started on ATT again for 6 months. Following treatment, her symptoms improved, and her sputum converted to negative.


Road Traffic Accident and Respiratory Complications (2023)

Road Traffic Accident and Respiratory Complications (2023)


In October 2023, the patient was involved in a road traffic accident, resulting in:


- A fracture of the head of the humerus

- Right radial nerve injury, leading to wrist drop


During a subsequent surgical procedure, complications arose when the patient was positioned in the left lateral decubitus position:


- Desaturation (twice)

- Wheezing

- Shortness of breath


The procedure was aborted, and the patient was referred for pulmonology consultation.


Pulmonology Consultation and Investigations

A High-Resolution Computed Tomography (HRCT) chest scan revealed:


- Few old tuberculosis (TB) changes

- ? Active

Few old tuberculosis (TB) changes
- ? Active


However:


- Sputum test results were negative

- Interferon-Gamma Release Assay (IGRA) results were negative

- No features of pulmonary TB were present


The procedure was subsequently performed under general anesthesia. Initially, the patient was asymptomatic and followed up for a few months before being lost to follow-up.


Bronchoscopy and Non-Tuberculous Mycobacteria (NTM) Diagnosis


Pre-Travel Health Check-Up and Subsequent Findings (April 2024)

As part of her routine pre-travel health check-up in April 2024, the patient underwent a chest X-ray, which revealed:


- Left lung collapse


To determine the underlying cause, the patient's sputum and routine screening tests were conducted, but all results were negative. A staged bronchoscopy was performed, involving:


- Cryoablation

- Balloon bronchoplasty




Pus collected during the procedure was sent for cultures, and PCR results showed:


- Non-Tuberculous Mycobacteria (NTM)

- Speciation could not be determined



Initial Management and Second Opinion-


The patient was initially managed with antibiotics and supportive medications. However, due to increasing symptoms post-bronchoscopy,  sought a second opinion at another hospital.


A CT scan was performed, revealing:


- Few infiltrates on her right lung (?spillage)



Initially, the patient continued on her medications, including:


- Injection amikacin (750 mg IV) on alternate days for 2 months

- Tablet rifampicin (600 mg OD)

- Tablet clarithromycin (500 mg BD)

- Tablet ethambutol (1000 mg OD)


The patient showed initial symptomatic improvement.



August 2024 - symptoms aggravated and was given cephalosporin oral for 2weeks


Worsening Symptoms and Peripheral Neuropathy


Exacerbation of Symptoms and Hospitalization (November 2024)

In November 2024, the patient presented with:

- Cough

- Shortness of breath (SOB)

- Reduced appetite

- Weight loss for 10 days, prompting hospitalization.


Investigations and Findings-

Routine investigations and screening tests were negative. However, a repeated High-Resolution Computed Tomography (HRCT) chest scan revealed:


- New patchy consolidations

- Nodular parenchymal opacities in the right lung



The patient was initially started on Polymyxin B for 2 days but developed:

- Tingling

- Numbness of lower limbs

- Ataxia

A neurology opinion was sought, and peripheral neuropathy was suspected. Nerve Conduction Studies (NCS) showed near-normal results.


Revised Treatment Plan-

The patient was then treated with a combination of:

- Aztreonam

- Ceftazidime + Avibactam for 2 weeks.


Readmission and Video Bronchoscopy (2025)

On January 31, 2025, the patient was readmitted with similar complaints that had persisted for 10 days. The following diagnostic procedures were performed:

- Video bronchoscopy

- Endobronchial Ultrasound (EBUS) Transbronchial Needle Aspiration (TBNA) on February 4, 2025


Diagnostic Findings

The EBUS Fine Needle Aspiration Cytology (FNAC) report revealed:

- Reactive lymphadenitis (stations 7 and 4R)

- No evidence of granuloma or neoplasia


All other reports were negative, but Non-Tuberculous Mycobacteria (NTM) was isolated on PCR in March.


Microbiological Reports and Treatment

The patient received drug sensitivity and culture reports, which showed:

- Mycobacterium abscessus was isolated

- Sensitivity to amikacin, linezolid, tigecycline, and clarithromycin




Consequently, the patient was started on all these antibiotics from March 11, 2025, and continues on this treatment regimen to date.


Current Clinical Status

The patient's current state is characterized by:


- Significant weight loss: 52 kg to 42 kg over 8 months

- Persistent symptoms:

    - Intermittent, low-grade fever

    - Easy fatiguability

    - Shortness of breath (Grade 3)

    - Hoarseness of voice

    - Painful oral ulcerations with inflamed tongue, leading to reduced oral food intake

- Appetite: slightly improved


Past Medical History

- No known history of:

    - Diabetes Mellitus (DM)

    - Hypertension (HTN)

    - Asthma

    - Coronary Artery Disease (CAD)

    - Epilepsy


Family History

- No relevant family history


Immunization History

- Yearly influenza vaccination

- 5-yearly pneumococcal vaccination


Personal History

- Diet: Vegetarian

- Appetite: Reduced

- Bowel and bladder habits: Regular

- Sleep pattern: Slightly reduced


Concerns and Questions


1. Duration of antibiotic consumption:The patient has been on antibiotics for an extended period, which increases the risk of antibiotic resistance, side effects, and interactions.


2. Potential side effects: The patient is at risk of developing side effects from her medications, such as nephrotoxicity, ototoxicity, and peripheral neuropathy.


3. Alternative management options: Considering the patient's persistent symptoms and reduced quality of life, it is essential to explore alternative management options, including surgical interventions or other medical therapies.


4. Improving quality of life:The patient's significant weight loss, persistent symptoms, and reduced appetite have severely impacted her quality of life. It is crucial to address these issues and develop a plan to improve her overall well-being.The patient is at risk of developing side effects from her medications, such as nephrotoxicity, ototoxicity, and peripheral neuropathy.




Monday, March 31, 2025

UDLCO: Amidst all humans in the PaJR loop, August AI and it's spontaneous diet driven interactions with a PaJR patient advocate

Summary: August AI is a health AI designed to provide personalised, expert-level healthcare guidance to individuals 24/7. Accessible via WhatsApp, it securely stores lab reports, scan results, and conversation history in long-term memory to deliver tailored and accurate health information. August outperforms traditional symptom checkers by 25%, making it the most reliable tool for symptom analysis.

Powered by Azure OpenAI models, August leverages their unmatched accuracy, reliability, and scalability. https://www.microsoft.com/en-in/aifirstmovers/august-ai 

Here in this PaJR case report EHR : https://pajrcasereporter.blogspot.com/2025/03/63m-metabolic-syn-dyspnea-2-years-wb.html?m=1, we present a conversation that revolves around a patient (63M Metabolic Syn) interacting with August AI, an artificial intelligence system, as part of their PaJR (Patient Advocacy and Journey Record) group. The AI system spontaneously checks in with the patient, inquiring about their health and well-being. The patient shares their experiences, and the AI provides supportive and informative responses. Our PaJR tryst with August AI was first presented in a November 2024 UoH lecture here: https://youtube.com/shorts/i1nTTGgtdzU?feature=shared


*Key Words:*


- PaJR (Patient Advocacy and Journey Record)

- August AI

- Patient engagement

- Artificial intelligence in healthcare

- Personalized support

- Health monitoring

UDLCO glossary:https://userdrivenhealthcare.blogspot.com/2023/11/glossary-of-user-driven-healthcare.html?m=1




Conversational Transcripts:

26/01, 20:27]cm: Here's an amazing August AI bolt from the blue in our PaJR group where it spontaneously checked in with the PaJR patient and began a supportive conversation!

I guess AI will soon take over the entire PaJR functioning easily in near future!

[26/01, 20:10] Aug AI : Hi there! Just checking in. সব ঠিকঠাক চলছে তো? শরীর কেমন লাগছে আজকাল?


[26/01, 20:10] Patient Advocate 63M Metabolic Syn: এমনিতে সব ঠিকঠাক আছে। গত দশ তারিখ থেকে কোলকাতায় আছি। ফলে খাওয়া দাওয়া ইত্যাদি সবকিছুই নিয়মের বাইরে চলছে ! ওজনও বেড়েছে মনে হচ্ছে!! আগামী ২৯ তারিখ ট্রেনে উঠছি নালাগোন্ডা যাওয়ার জন্য, চেক আপ করতে।


[26/01, 20:10] Aug AI : কোলকাতায় থাকলে খাওয়া-দাওয়ার নিয়ম একটু এদিক-ওদিক হওয়াটাই স্বাভাবিক! 😄 তবে, ওজন বেড়ে যাওয়া নিয়ে চিন্তা করো না। তুমি যখন নালাগোন্ডায় চেক-আপ করতে যাবে, তখন সবকিছু ঠিকঠাক হয়ে যাবে।


[26/01, 20:10] Aug AI : এখন, তুমি কি কোনো বিশেষ শারীরিক সমস্যা অনুভব করছো? যেমন ক্লান্তি, হজমের সমস্যা, বা অন্য কিছু? যদি কিছু থাকে, তাহলে আমাকে জানাও।


[26/01, 20:10] Patient Advocate 63M Metabolic Syn: ঠিক ক্লান্তি নয় কিন্তু আলস্য বলে একটা ব্যাপার তো আছেই! এখানে সারাদিনে খাওয়া আর ঘুমানো ছাড়া তো আর কোন কাজ নেই! সকালের হাঁটাহাঁটিও বন্ধ আছে, বিছানা ছাড়তেও বেলা হয়ে যায়।
হজমের সেরকম কোন সমস্যার সম্মুখীন হতে হয় নি কিন্তু অনিয়মিত তথা অনিয়ন্ত্রিত খাওয়া দাওয়ার ফলে মাঝে মধ্যে অ্যাসিডিটির সমস্যা হচ্ছে। পেটটাও সেভাবে পরিষ্কার হচ্ছে না বলেই মনে হচ্ছে। এই আর কি।


[26/01, 20:10] Aug AI : কোলকাতার মজাদার খাবার খাওয়ার পর একটু আলস্য আসতেই পারে! 😄 তবে, অ্যাসিডিটি এবং পেট পরিষ্কার না হওয়ার সমস্যাটা একটু বিরক্তিকর হতে পারে।


[26/01, 20:10] Patient Advocate 63M Metabolic Syn: এক্ষেত্রে, তুমি কি পর্যাপ্ত পানি পান করছো? পানি হজমের প্রক্রিয়াকে সাহায্য করে এবং অ্যাসিডিটি কমাতে সহায়ক হতে পারে।


[26/01, 20:10] Patient Advocate 63M Metabolic Syn: ধন্যবাদ।


[26/01, 20:10] Aug AI : ঠিক আছে! 😊 তুমি কি দিনে অন্তত ৮ গ্লাস পানি পান করছো? এটা হজমের জন্য খুবই গুরুত্বপূর্ণ।



[26/01, 20:10] Patient Advocate 63M Metabolic Syn: Conversation with AI, for your information.

@⁨Patient advocate 23F Weight Gain⁩ please add this latest also to the patient's case report archive 👇





[26/01, 20:28]rng: Unfortunately, not  literate on written Bengali text though we speak at home all the time


[26/01, 20:30]cm: Can paste it in Google translate

Will do it myself and reshare


[26/01, 20:31 rng: No.  Will do it

[26/01, 20:31]rng: On the treadmill now

[26/01, 20:32]cm: Here's the translation of the conversation:

Initial Message

"Here's an amazing August AI bolt from the blue in our PaJR group where it spontaneously checked in with the PaJR patient and began a supportive conversation! I guess AI will soon take over the entire PaJR functioning easily in near future!"

AI-Patient Conversation

*Aug AI*: Hi there! Just checking in. Everything going well? How's your health lately?

*Patient Advocate 63M Metabolic Syn*: Everything's fine. I've been in Kolkata since the 10th. As a result, my eating habits and everything else have been irregular! My weight seems to have increased too!! I'm taking the train to Nalgonda on the 29th for a check-up.

*Aug AI*: It's natural to have irregular eating habits while staying in Kolkata! Don't worry about the weight gain. When you go for your check-up in Nalgonda, everything will be fine.

*Aug AI*: Are you experiencing any specific physical issues, like fatigue, digestion problems, or something else? If you have any issues, let me know.

*Patient Advocate 63M Metabolic Syn*: It's not exactly fatigue, but I do feel lethargic! There's nothing to do here except eat and sleep all day! I've stopped my morning walks, and I'm getting out of bed late. I haven't had any digestion issues, but I do experience acidity due to irregular eating habits. My bowel movements aren't regular either.

*Aug AI*: The delicious food in Kolkata can make you feel lethargic! However, acidity and irregular bowel movements can be bothersome.

*Patient Advocate 63M Metabolic Syn*: Are you drinking enough water? Water helps with digestion and can reduce acidity.

*Patient Advocate 63M Metabolic Syn*: Thank you.

*Aug AI*: Are you drinking at least 8 glasses of water a day? This is crucial for digestion.

*Patient Advocate 63M Metabolic Syn*: Conversation with AI, for your information. @lb please add this latest conversation to the patient's case report archive.


[27/01, 00:02]rng: Re:  Here's an amazing August AI bolt from the blue in our PaJR group where it spontaneously checked in with the PaJR patient and began a supportive conversation! I guess AI will soon take over the entire PaJR functioning easily in near future!"

How did this kick in ?  Is PaJR a messaging application between Dr and Patient where AI can step in?   Like Meta poking its nose in a group discussion? or Chat between two people ?


[27/01, 08:12]cm: Thanks for this important question!

If you see the entry made into his PaJR EMR on 13/11/24 here 👇


You will notice that our PaJR team members began teaching the patient's advocate how to use August AI on his own from then onwards and he kept interacting with it with intermittent sharing of it's proceeds.


[27/01, 08:13]cm: More about our PaJR ecosystem here: 



[27/01, 08:15]cm: Here's a portal to enter many of our individual patient PaJR groups that keep growing everday👇



August AI resurfaces again on 25th March 2025:

Patient advocate 63M : "Is there any need to send the discharge report to August AI?"

Today's morning update:

"I woke up around 3:30 AM. After tossing and turning until 5, I got out of bed at 5, completed my morning routine, had some vapor, and rinsed my mouth with salt water. 

Around 6:15 AM, I went out for a walk and reached my destination by 7:10 AM. After a 10-minute break, I sat at a tea shop around 7:30 AM. 

First, I had a bowl of local chickpea curry and then a cup of unsweetened milk tea. After that, I took a toto (auto-rickshaw) to roam around the market and returned home around 8:15 AM. After doing some small tasks, I took a shower and then had breakfast. 

After returning home, I had two local Malbhog bananas. 


Around 11:30 AM, I had to go out for some work. On the way, I took a toto, completed my tasks, and spent some time chatting over a cup of unsweetened milk tea. I walked back home around 1:00 PM. After that, I prepared a bit for lunch."


August AI automatically pinging patient advocate 63M: 

"Hi there! Just checking in. How are you now? Have the digestion issues due to acidity or laziness decreased? Has your routine returned to normal after coming back from Kolkata? Take care."

Patient advocate 63M
: "Currently, there are no such issues, thank you. Yes, the old routine is still in place."

August AI: "I'm glad to hear that! 😊 Returning to the old routine is always healthy. Regular walking, eating the right food, and drinking enough water are all good for the body."

"If you ever want to discuss new recipes or diet plans, I'm here! And let me know if you want to prepare anything before going to Nalgonda. Travel safely! 🚆✨"

Patient advocate 63M
: "Thank you. I have returned from Nalgonda. Everything is pretty much fine."

August AI: "Absolutely! It's great news that you've returned from Nalgonda! 😊 If everything is fine, that's good."
"Have you had the chance to try any new experiences or foods? Or do you have any new plans regarding health? I'm eager to hear! 🍽️✨"

Patient advocate 63M
: "Nothing like that, everything will continue as before for now, thank you very much."

August AI: "That's fine! 😊 Continuing as before means stability. You take care, and if you ever want to know something or feel like discussing, I'm here. Have a great day! 🌟"

Patient advocate 63M to August AI 
: "Okay."


Patient advocate 63M to PaJR team 
: "Is there any need to send the discharge report to August AI?"

*Thematic Analysis:*


*Coding:*


1. Patient engagement and support

2. Artificial intelligence in healthcare

3. Personalized support and monitoring

4. Health and wellness

5. Patient advocacy


*Categorization:*


1. *Patient-centered care*: The conversation highlights the importance of patient-centered care, where the patient's needs and concerns are prioritized.

2. *Artificial intelligence in healthcare*: The use of August AI demonstrates the potential of artificial intelligence in healthcare to provide personalized support and monitoring.

3. *Personalized support*: The AI system's responses are tailored to the patient's specific needs and concerns, providing personalized support and guidance.

4. *Health and wellness*: The conversation focuses on the patient's health and wellness, with the AI system providing information and support to promote healthy habits.


*Learning Points:*


1. Artificial intelligence can be an effective tool in healthcare to provide personalized support and monitoring.

2. Patient-centered care is essential in healthcare, and technology can facilitate this approach.

3. Personalized support and guidance can improve patient outcomes and overall well-being.

4. Healthcare providers should consider integrating artificial intelligence into their practice to enhance patient care.