Saturday, September 3, 2022

Medicine department current stance on LORs


Conversational learning transcripts :


[9/3, 9:09 AM] LOR Seeker: Hi sir 
Good morning


[9/3, 9:10 AM] LOR Seeker: 

Hope you are doing good 
Myself ... 
I am from 2Kxy batch.
I did my internship under you.

I was with xyz mam, abc sir..PGs 


[9/3, 9:12 AM] LOR Seeker: I gave my step exams and currently working as a research fellow currently at ...US 


I need your support for the residency application. 

I am so sry I am very informal texting you.

I am currently in US,so couldn't meet you in person to request you an LOR.


[9/3, 9:13 AM] LOR Seeker: Could you please send me your email address so that I can send my eras portal request to upload an LOR.


Thank you.

Hope you consider my request. 

Sincerely, 


[9/3, 9:14 AM] Medicine Department: 

Can you share some links to your work to let me assess you for the LOR?


[9/3, 9:17 AM] LOR Seeker: Sir,I will send few cases which I worked on and presented.

The mortality and morbidity meets which I attended.

Amma Nana ashram visits.

But in that year,we didn't create an online portal for our patients which was started 2 years later...

[9/3, 9:19 AM] Medicine Department : Currently we are providing LORs only to our students who are working with us in our current projects here 👇



[9/3, 9:27 AM] LOR Seeker: Ok sir 
Thank you ...
I will try uploading my cases if I can.


[9/3, 9:31 AM] Medicine Department : 

No we may have a better project role for you. 

Can you share the deficiencies in the current case reports posted by the current batches listed here 👇

We can add you to our current 2017 case discussion group for the same


[9/3, 9:33 AM] LOR Seeker: Yes sir
Sure will do


[9/3, 9:42 AM] LOR Seeker: It was so good and helpful.
I could have asked you and joined the group long back..

I have my deadline to upload my LOR in 10 days.

Still,I will do my best and be in touch base with my juniors and provide my input.


[9/3, 9:43 AM] Medicine Department : Better get that LOR from the college Principal office as per protocol


[9/3, 9:45 AM] LOR Seeker: Most of the program's are asking from the chair of Internal Medicine sir.

I have submitted my MSPE from principal sir.

I worked under you during my internship.So,thought I would take from you


[9/3, 9:47 AM] Medicine Department : 

Should have thought about it earlier. We don't do 10 days.  10 months is the least we can do although most of our LOR students are 5 years


[9/3, 9:49 AM] LOR Seeker: Yes sir .I even regret that.

I didn't knew that,my friends last year have taken like that.
So I am not sure of the process.

I am really sorry for that.

Thank you for adding me to the group.


[9/3, 9:51 AM] Medicine Department : 

Many of your friends didn't get our LOR as they couldn't live up to these requirements we set for them

Previous stance on LORs from Medicine department :



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Friday, September 2, 2022

Current PaJR workflow and how to make the most of it for the patient and health professional team

Electronic records may only improve access to documentation of incomplete assessment and inappropriate treatment and may not represent true quality of healthcare that reflects respect for the patient, comprehensive follow-up and medical responsibility for individual patients and more penetrating investigation of the root causes of problems by teams of health professionals who have a professional relationship with a patient. This was from an anonymous peer reviewer of one of our papers in BMJ where we had talked about the role of informational continuity. 


This is exactly what we are trying to address in our PaJR groups where we have transformed the dyadic relationship between single patient and doctors to provide a team of doctors for one single patient with comprehensive care centred around their requirements. (More about this transformation of the dyadic in our past communication here : 

It's a work in progress but we thought we need to put certain things out here for public consumption about our PaJR workflow :

INTRODUCTION :

Key considerations for the translation of the con cept of the Patient Journey Record Systems (PaJR) into real world systems was first shared and archived here below :
"Patient Journey Record Systems (PaJR): The Development of a Conceptual Framework for a Patient Journey System. In R. Biswas, & C. Martin (Eds.), User-Driven Healthcare and Narrative Medicine: Utilizing Collaborative Social Networks and Technologies (pp. 75-92). Hershey, PA: Medical Information Science Reference. doi:10.4018/978-1-60960-097-6.ch006 at http://www.igi-global.com/chapter/patient-journey-record-systems-pajr/49246

The key concept lies in the use of regular patient reported outcomes to locate the phase of illness in a 
patient journey.

WORKFLOW and RULES :

Conversational learning transcripts-- 

PaJR buy in--

PaJR Team member and coordinator to a patient and potential new PaJR team member around whom the entire PaJR group (consisting of health professionals and expert patients or patient advocates with their own PaJR groups) is centered --

 
Would you like to be added to one of our PaJR groups where, a team will be centered totally around your care (including your current health issue)?

This is a current healthcare project where we are reversing the traditional dyadic doctor patient relationship to multiple doctors and a single patient relationship! 

Do share your whatsapp number if interested. 

Patient : please do not do this. 
I feel very uncomfortable dealing with my physical problems. You can always discuss me as a patient keeping me anonymous. 

PaJR Team member :  Yes I forgot to mention that in each one of our patient groups we keep the patients deidentified and anonymous and most of them do interact also sharing their regular updates on the group largely as their own advocate not letting the group know that they are actually the patient. This ensures no online traces of their identify and all group members take utmost care to preserve the patient's confidentiality. 

It's all designed for the patients to take charge of their own healing and become better informed about all the nitty gritty science of their illness journey. A deidentified online accessible case report of the patient can be created by one of our trained students as the first step. We need a signed informed consent from the patient to go ahead with this and it can be downloaded in multiple languages here : http://medicinedepartment.blogspot.com/2020/05/informed-patient-consent-and.html?m=1



Patient : If it is anonymous, I have no problem. In any case, if you shared details with your colleagues without my knowing about it, I would never have an issue 

PaJR Team member :

As the patient's advocate you will be addressing yourself in the third person everyday in the PaJR group and you will make sure that your privacy and confidentiality is preserved through deidentification and the group members will also make sure that the patient is deidentified as anyway the group members shouldn't be having a clue as to who the actual patient is other than the ones who have created the patient group. 

One of our students will phone you to create your deidentified case report before you start sharing the daily patient details in the PaJR group

Your daily sharing will make the PaJR team anticipate a major problem well ahead in advance such as a sepsis resulting from a local pathology that can be identified as to what level it's brewing. For example is the anal fistula in our patient going to spread systemically to produce a sepsis cascade manifested in fever (among other subtle early indicators noticeable in what the patient shares daily in the PaJR group)?

Daily sharing of details in our PaJR groups primary involves sharing the patient's daily input and output. 

Inputs in a patient's journey are the individual's energy inputs, shared regularly as sensory experiences of the patient, sometimes even in images (such as daily images of food, fluids and deidentified locations that they may like to share as their visual sensory inputs other than their daily narratives (including poetry) on their illness journey such as the narratives you have been sharing already in emails but it will be done in third person without the advocate's giving away the fact that she could herself be the patient). 

Outputs in our patient journey are essentially the individual's energy outputs, reflected in the patient's motor activities such as exercise (that may even be as simple as sitting and standing), urine output, stool output and any other organ system output relevant to the patient's case. 

In our PaJR groups you can expect to see and learn to cognitively handle a lot of biological (often disgusting for a large majority of people) images that can go beyond average cognitive handling capacity as they are far beyond what one may imagine experiencing in the usual biology wet labs but what unifies them and perhaps makes everyone worth take the risk of joining these groups is that they are very very human images and not only project human vulnerability like one may have ever experienced before but also offers solutions from the PaJR's collective cognition that again one may not have had the opportunity to experience before. 

Overall it's one  hell of a learning opportunity for all humans (citizen scientists even future citizen astronauts) although all the humans in the group have to abide by the rules and prime among those are patient deidentification and patient confidentiality with open access sharing and updating of all deidentified  data in the individual's case report as long as they are not sensitive information that the patient would feel uncomfortable about even if deidentified. 

All data in the case report would be verified by the patient for sensitivity and confidentiality before it's shared as an open access case report. 

Let me know if when you are ready. I can begin by just adding you to some PaJR groups for you to assess how the patient advocates there share regularly. These would be like level 1 groups and not the one's that are disgusting as that would be level 2.

Patient : Sure, go ahead.
Right now my worries are wearing me out. The swelling  and pain are progressively getting worse. 
I am finding it difficult to decide what to do. 

PaJR team:  Meeting an understanding physician or surgeon in your location for them to review the area of pain and provide their inputs would be very useful. You have already done that and can revisit the local doctor if when necessary, which will also be directed by our PaJR Team when ever their collective clinical judgement mandates. 

One of our patients used a mobile phone to capture for us the physical condition of his peri anal pain area by filming his bottom while squatting in the toilet and we were stunned by the insights from the images that we ourselves had seen while examining him in a different position (obviously would be difficult for anyone to peer into a bottom when someone is squatting). 

If you think you would be curious to see those images here: https://ssahamedicalcases.blogspot.com/2022/07/patient-history-pt-is-29-yr-old-male.html?m=1 and if you aren't put off by this to let us  make your own case report, then I can ask our student to phone you right away and begin the process. 

Patient : I do not want to see the images.  But I can send my image, if that will help me. Not exactly how you asked, but perhaps lying on the bed. Gosh, you guys! :-)
Incidentally, I am a bit better now, I do not know how.  The pain is much milder. 

PaJR regular conversational decision support transcripts in certain PaJR updated  individual case reports here : https://ssahamedicalcases.blogspot.com/?m=1



Further reading: 



PaJR initiation checklist :


PaJR hospital outpatient workflow details :


PaJR data capture, analysis and outcome driven workflow :


PaJR CBBLE UDHC driven medicine department workflow :


PaJR homehealth monitoring UDLCO 

Internal medicine monitoring :



Energy input output (lifestyle balance) monitoring :




PaJR homehealth UDLCO:




PaJR Jarvis UDLCO :



PaJR energy input Pan India variety :


PaJR energy input guidelines :



User driven healthcare glossary :



History of PaJR and UDHC :


Scholarship of integration :


Further reading on Medical Cognition:


Further reading on deidentification and anonymity :


Recent conversational PaJR update :

November 2023:

AB in NPC group :


I have spent a lot of time in hospitals over past few yrs in particular across NCR and Blr so here's my (albeit naive) take on patient experiences 
1. parking is cumbersome. I get that there is limited space but often the walk from parking to reception is very painful. Esp with a patient in tow. The shuttle services are limited etc. suggestion- better buggy service and call service. Suggestion- once inside hospital, each person can talk (voice or chat) to a command center at press of button and they are super helpful and have all your context/history/real time status and location etc. The app is the hospital Jarvis. Yes, powered by an LLM+human in loop. Super smart and efficient and contextual. It should know more about you than you. 
2. at the reception. It is a kumbh mela often. You don't know where to go, register pay. The app guides you plus the Hospital Jarvis. 
3. Queues at counters and payments are still huge source of bottleneck and frustration. Make it mostly self-serve via Jarvis. Ensure any counter has great ticketing system w/ great displays and status etc
4. Wait times at appointments and tests etc. Jarvis is real time everything- patient, doctor, tests, payments, all of it. 
5. Doctor should have all the pre-history and context (fed in prior to hospital visit via chat w/ Jarvis) for more efficiency. Please don't read this one as the doctor is not needed or needs to change his/her clinician approach! This is augmentation. 
6. All admission etc should be highly digitized outside counter (80-20 rule). Jarvis. 
7. No manual form filling etc. All digitized. Only exceptions. Jarvis. 
8. Emergencies and senior care etc is all highly fast tracked. Jarvis
9. We could go on here...

RB in NPC : 

Taking off from point 9 where Atul left it and also try to address the pain points that both Atul and Ravi wanted. 

I won't talk about Jarvis but something that we use every day called PaJR but for the sake of this discussion let me call it PaJR Jarvis. 

We are a rural medical college adjacent to Hyderabad and I often point out to our administration that we are similar to what CMC in rural Vellore was many years ago and the only difference was they achieved global class care and fame at that time  without half of the infrastructure we may currently have and expectedly the administration on hearing this everytime, give me that look of having seen an intergalactic hitchhiker without a guide! But then as Ravi knows, I'm reconciled to people admiring my WQ (weirdness quotient)! 

Getting back to PaJR, we cater to a rural hamlet in a remote corner of India 2000 kms away from Hyderabad as opposed to CMC Vellore which caters to remote corners everywhere in India so just saying we are a small scale cottage industry compared to them and hence ours is an easy to handle Jarvis PaJR model 

The first call by the rural hamlet patient happens through a text message to our human Jarvis coordinator between that hamlet and hospital following which one of our students are recruited to prepare a detailed case report of the patient that sometimes at one extreme even makes it unnecessary for the patient to come to the hospital and at another extreme we may need to contact their local physician asap. 

Once the case report and PaJR group is prepared, the patient advocate keeps texting the patient's hourly daily activities (energy expenditure) as well as food plates (energy inputs) and the patient's symptoms in those hourly slots that also allow us to identify potential solutions to their requirements. There are around 20-30 other members of our doctor student team added in the same group and it's a unique model where the traditional dyadic doctor patient model is disrupted in favor of a team patient model where a single patient enjoys care coordination of 30 doctors! 

If surgical solutions are felt necessary or we need to meet the patient face to face once and run a few hospital tests before starting medicines they make a 2000 kms journey and right from their homes they are free to text their travel, parking, direction and previously discussed other pain point requirements and one of the 30 other team members respond to it asap. Once here even inside the hospital the same PaJR group is utilized to text their daily requirements and face to face meetings with the doctors hierarchically scheduled in the group. Same continues even after they go home and continues for life. 


However hospitals often analogous currently to giant ENIAC computers of yore that may not have been as powerful as the mobile we currently carry and the same is the future disruption that awaits healthcare once our equipments become more and more portable and the hospital shifts to every individual home. Even then PaJR Jarvis would stay albeit in the next gen wearable mobile! 


Above figure available open access here :


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Deidentifying and anonymizing patient data toward open access case reporting and case based reasoning analytics

Conversational learning transcripts from 2013-2022


2013:
This detailed guidance for De-identification of patient health information here: http://www.hhs.gov/ocr/privacy/hipaa/understanding/coveredentities/De-identification/guidance.html may be a useful reference for the ethical committee. 

There has been a recent amendment to the HIPAA laws discussed here: http://www.securityblawg.com/

Going through the last discussion link i get the impression (which Rajib was perhaps trying to also initially suggest) that HIPAA patient privacy regulation could be more of an avenue toward big business gains for the US politico-legal nexus. We on the other hand are trying to apply an evidence based informational delivery system for better health care delivery to the developing world where people (as per HIFA) may be dying for the lack of health information. 

The above is still hypothetical and although HIPAA and its amendments may not be always relevant to our settings we would definitely need to maintain a good level of protection for our patients and further develop our own de-identification framework for their optimal benefit (as suggested by Tamoghna). 
On Sun, Jan 13, 2013 at 11:42 AM, Tamoghna wrote:

I would be advocating for maintaining data privacy and the absolute need for obtaining informed consent before sharing data.
I would also maintain that it should be upto the patient to decide the level of privacy he wants in his health records being shared. However, until we achieve that level of awareness among our patients about their legal rights, we need to take the onus on ourselves to see to it.(sounds paternalistic, but most of publicly funded healthcare in India works that way). HIPAA is not perfect, but it's the only standard we have at this moment.
Privacy is important in India, not for the insurance claims, but for the reason that disease associated stigma is more widely prevalent here than in the west. A diagnosis of HIV/TB/mental illness etc still carries a lot of unjustified stigma in urban India(I assume the picture is worse in rural India).
That makes it pertinent to stick to confidentiality guidelines while sharing data across the web.
From: Rajib Sengupta<>
Date: Sun, Jan 13, 2013 at 11:19 AM
In my opinion this privacy laws (HIPAA) etc done for some western country is really an artificial barrier.  Is there a similar law in India?My each and every information including my house is available openly in internet. May be in an insurance driven country the privacy etc makes sense. But in India, it just adds inefficiency in the process.. can we start a discussion about this? ... Can we disrupt this artificial barrier from India and may India will show the world a new way at looking at privacy when it comes to medical intervention where each hour is important?
2016:

Got back from casualty and cancelled a class so have some time to peck at these keys a bit more before lunch. Warning: long mail, cut short to the bottom line in PS to decide if you really need to read it. :-)

In response to Dr Rajeev's query/bottom-line: 

Lets say someone you know has diabetes (and lets say his age is 35 years). Could be a bit embarrassing for that person if it is attributed by his doctor to the trunkal obesity (which automatically would be interpreted by everyone as his own fault) but again as every other person currently has this it may not be a big deal? Now a few years down the line this person is unable to lose his trunkal obesity or his diabetes and also develops erectile dysfunction due to diabetes. The embarrassment level in having to share it with a collective may increase (people are even afraid to share it with their own doctor)?  Fine: still may not be necessary to protect this patient from his data (i emphasize on the ability of the collective to be able to figure out that this data belongs to this patient). Lets think this same patient develops HIV (from his insulin syringes that get inadvertently exchanged with someone, a long shot i know but then in medicine anything is possible) and now his employer notices that he gets regular free CD4 and HIV drugs (aka HAART) on his AADHAR ID from the Govt ART center ( govt benefits) and decides to fire him...

With the above anecdote (possibly generalize-able)  my contention is just that this is a wicked problem that needs more deliberation before we jump the gun on using the aadhar as a UHID. 

Again i may be missing something and would like to be guided by the collective here. Meanwhile here's http://missinglink.ucsf.edu/lm/ethics/Content%20Pages/fast_fact_auton_bene.htm, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2881979/  some general reading on this topic. 

best, 

rb

PS: Missed the other important analogy brought out by Dr Rajeev of correlating health information with financial information. This is tricky and may be reviewed in the manner below?: 

The govt gets to know that certain bank account numbers (de-identified) have a huge sum of money in Swiss banks and yet as they are de-identified they are unable to do anything about it. However all they need to do (if they feel this is important to the collective majority of Indian population) is to approach the bank manager and ask for the name? This may be analogous to what they can do by approaching the patient's doctor in special case scenarios where they are sure that a given individual patient's health i e Ebola is hazardous to the collective and this person needs to be quarantined and cared for in a special manner. 

My current Bottom-line: The health information of an individual should be the collective responsibility of that person's doctor (who should be identifiable) and the patient (who should be de-identified to protect his autonomy) and yet the data can be used (after de-dentification) to enrich science. 


On Wed, Aug 10, 2016 at 11:57 AM, rajeev joshi wrote:
Dear Dr Rakesh,

One of the uses of aadhar linked services is to give benefits to appropriate individual and avoid monetary losses to agents. 
In that connection de-identification of person is not considered as important issue. This is an example of non-health use of UID.

Now about patient specific information. From society point of view, in case of epidemic of infectious diseases, identification
of index case, its isolation and subsequent treatment and result thereof are also important issues, where de-identification is
not all that important. In fact immediate neighbours of the patient affected with infectious disease MUST be aware of sickness.

As far patient being identifiable to government, I do not think there should be much problem, as finally government is supposed
to give healthcare related benefits to the patients in case of epidemics as well as natural disasters. At such times, information
regarding patient must be available to government agencies taking care of the patient.

There is one more possibility which is being attempted by one organization in Pune, which is eHealth Card. Unless and untill
the card is not swiped, the information is not available to doctor. But does it not add one more hurdle in imparting healthcare?
Or it would protect identity of the patient's information in same manner as our financial information is protected by use of
Debit Card. And how many stories we read about money being withdrawn from ATM machines illegally without ATM cards?

Would health data be all that secure and is it all that necessary?

Rajeev

From: Rakesh Biswas 
To: IAMI_Members


Thanks Prof Moidu, 

The question is should the society set the level of patient privacy for an individual patient? :-)

I guess when a patient seeks his/her healthcare traditionally s/he would approach a doctor and transfers a lot of his/her personal details for the express usage of the doctor (for his/her own good)? While the doctor as an individual, becomes accountable here for safeguarding the patient's privacy can we expect collective-society to demonstrate the same amount of accountability?

I am sure if we had a good governance and good-society as a collective these questions wouldn't have arisen. :-)

Dr Rajeev's email just came in as i was composing this one and i agree that we need a workaround or center-point to accommodate for this need to identify an individual (to save the collective). Perhaps we need to identify the doctor and tag him to his patients (who may not be identifiable) and hold the doctor accountable if s/he doesn't report some of the situations where collective knowledge about the individual would save many more people (perhaps this is what was standard practice anyway)?

Sorry to send this off in a hurry without reading it twice. Have to rush to the casualty now. 

best, 

rb



On Wed, Aug 10, 2016 at 11:47 AM, K. Moidu, MD, PhD 


Rakesh:

Having an ID  does not expose or secure your data in terms of privacy.

An ID is for identification, it should be common, constant, and consistent.

Access to data can be secured and should be secured to the extent a society sets a level of Privacy.

However,  while you can expect Privacy do not expect anonymity.

You perhaps had a higher concern.  Perhaps I did not get your comment as you intended.  Do repeat and clarify where I deviated.

//km

 
On Wed, Aug 10, 2016 at 11:33 AM, Rakesh Biswas wrote:
Just wanted to share a different view point: 

Would it be safer to use a universal patient life-time-EHR identifier UHID such that patient confidentiality and privacy is controlled solely by the patient and hidden even from the Govt (who it is assumed will always look after the patient but any system can be fallible at times)?

Having an AADHAR ID as UHID (let me know if i missed something here) may still make the patient identifiable to the Govt (and may not always be in the best interest of individual patient autonomy)? 

Would it be safer to have a de-identified patient ID that is solely controlled by the patient? The patient can just choose a code name from a names data base and utilize it for all his/her transactions through the EHR? Please correct me if i missed something here. 

best, 

rb  

2022/8/31, 11:41 AM 

Sanjana: 


This article highlights how de-identified data can always be re-identified and how this is not a perfect way of patient data protection. However, it is preferred to anonymity as we need it for research


[8/31, 11:42 AM] Sanjana 2019 batch : 

Quoted: 

"Shah says health record data should be kept private in the same way it is kept private when used by a patient’s medical team. “If we’re not worried when the doctor sends our detailed records to our physical therapist or nutritionist to provide care today, we should be OK with allowing it to be used for purposes that could improve our care in the future,” he says.

It’s also a matter of contributing to the common good, he says. “If I want to benefit from someone else’s data, I have a duty to also share my own.”"


[8/31, 11:45 AM] Avinash Gupta Nepal:

 Some ways of privacy protection are easy to crack, some are hard. 

May vary case to case basis also. 

I believe we are doing enough De-identifiication which can be considered as strong privacy protection except the fact that when case records begin, the patient is present somewhere in hospital (something where our *weakest link* is) and later when patient discharge it can again be found if someone gets access to paper records  or digital billing records or digital lab records ( *hack*) .


[8/31, 11:50 AM] Avinash Gupta Nepal: 

We follow hipaa to learn and do De-identifiication and also checked with disha. Waited for PDP bill but it's not out yet neither any equivalent. The image shown here had been posted in hospital for learners to not miss anything and also we have been always actively auditing every case to prevent errors and correct ASAP. 



[8/31, 11:50 AM] Avinash Gupta Nepal: The image shown here was made by me in 2017




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