Breaking Barriers in Rural India with Patient Centered Care and Shared Decision Making: Narrative Evidence Dealing with Clinical Complexity
Abstract:
In the following narrative, the authors delve into two cases, each centered on the management of a patient with a complicated health profile. In the first, the focus lies on the gaps in rural healthcare and the challenges a physician faces in addressing them. The second case focuses on a potential solution for the aforementioned challenges and explores the role of collaborative healthcare, supplemented with technological aids, which can assist in point-of-care solutions.
Narrative – 1:
The middle aged woman had been transported all the way from North Bengal (1500 km away) by her son with an intravenous bottle of saline to our ECHO room; that was the first time I saw her. She was in a drowsy stupor and her emaciated frame caught my attention, yet, I could not pass over the other patients to see her first. Patients guarded their linear hierarchical territories; most of them had been waiting since the wee hours of the morning. I made sure she was alive, then quickly started evaluating the others.
The middle aged woman had been transported all the way from North Bengal (1500 km away) by her son with an intravenous bottle of saline to our ECHO room; that was the first time I saw her. She was in a drowsy stupor and her emaciated frame caught my attention, yet, I could not pass over the other patients to see her first. Patients guarded their linear hierarchical territories; most of them had been waiting since the wee hours of the morning. I made sure she was alive, then quickly started evaluating the others.
Her son had emailed a scanned letter (figure 1) a few months ago to seek a medical consult. The only information he wanted to know from me was if there was a cardiac contraindication to her mother's cholecystectomy. I had responded with a one-liner stating the available investigations did not seem to suggest any. The letter also told me she had been hospitalized in the intensive care unit with chest pain and the accompanying investigations suggested no obvious cardiac abnormalities. However, there was a gallstone on ultrasound and I assumed that could be responsible for her symptoms.
Four months later, when I had all but forgotten about her, her son sent me another letter. She was still not doing well and he wanted to know what was wrong with her. Since the local physicians could not pinpoint the exact cause of her symptoms, he was suggested to try his luck one last time with our institute, albeit far away.
Having met her in the ECHO room, I thought I might was well begin my clinical evaluation with an echocardiography. The scan appeared to be normal. Next on my priority checklist was to evaluate her central nervous system. She was bedridden for last two months and on examination had motor weakness in lower limbs as well as absence of reflexes - which hinted towards a peripheral neuropathy. She was stuporous, though arousable on deep painful stimuli and seemed to be mildly delirious. She called me “bang aer daktar”2 when her son introduced us. This means a “doctor of frogs” in Bengali, it is sometimes used by patients to express their disgust in general for doctors
There are many things in this description which could be difficult to explain if one does not know Bengali. “Could she be having an underlying malignancy?” I wondered. I got her admitted in our ICU and obtained a repeat Chest X ray which showed coin-shaped shadows suggestive of cannon-ball metastasis. Her Breast and Gynecological exams were normal, but her abdominal CT scan revealed a tennis ball shaped tumor in her gastric fundus. A CT-scan of her head showed severe diffuse cerebral atrophy (figures XYZ).
Her son appeared satisfied to have finally received a diagnosis. He took her home today, again on a bottle of saline, exiting quickly before she breathed her last in the foreign far-away land. Perhaps we could have avoided their having to come this far? I hoped she survived the return journey, which involved their taking a circuitous route back. Two weeks after she reached home, the patient passed away. As I went over the email the social worker from the village sent me, I ruminated about what could have be done differently.
A fundal growth may not give rise to the classic symptoms of gastric obstruction that we are so very used to seeing with stomach cancers. Owing to the confounding symptoms she presented with, it would still have required a full work-up, including an endoscopic evaluation. But I wonder, perhaps there could have been some diagnostic clues that could have made the treating physicians suspect something amiss and investigate further and sooner? Could the fact that she became comatose have alerted her primary caregivers to consider other differentials?
Would it be useful to develop a robust network of primary care 'onsite' workers monitoring and communicating with an 'online' network of 'clinical problem solvers' who could monitor these and take early action?”
Would it be useful to develop a robust network of primary care 'onsite' workers monitoring and communicating with an 'online' network of 'clinical problem solvers' who could monitor these and take early action?”
Narrative - 2
Mr. K, a retired schoolteacher, experienced childhood adversity first hand. After he successfully
worked his way out of a feudal system to attain formal education and chose to return to his roots
as a school teacher. He has since worked in his village in Mathabhanga, trying to eradicate the
triumvirate curse of poverty, illiteracy and health-ignorance. Naturally, when this dynamic
octogenarian suddenly fell ill a few months back, his family was worried.
as a school teacher. He has since worked in his village in Mathabhanga, trying to eradicate the
triumvirate curse of poverty, illiteracy and health-ignorance. Naturally, when this dynamic
octogenarian suddenly fell ill a few months back, his family was worried.
A sudden-onset disorientation, which kept worsening with time, was made more difficult for
the family when Mr. K started suffering from retrograde amnesia as well. The local physician
felt this was a matter of sleep-deprivation and prescribed accordingly. As Mr K’s condition
continued to deteriorate, his son (a social worker by profession) got alarmed and
contacted RB, a physician and the moderator of the online user driven healthcare network.
the family when Mr. K started suffering from retrograde amnesia as well. The local physician
felt this was a matter of sleep-deprivation and prescribed accordingly. As Mr K’s condition
continued to deteriorate, his son (a social worker by profession) got alarmed and
contacted RB, a physician and the moderator of the online user driven healthcare network.
On processing the initial history (supplemented by additional emails and telephonic correspondences),
RB explained the need for further imaging to rule out the possibility of a stroke and other cerebral
causes. The family arranged for Mr K to be taken to the nearest city (120 km away)
to get a CT Scan (head) done. A subdural hematoma was noted and the neurosurgical
consult revealed a grim prognosis for the condition without surgery.
However, the surgery in itself posed multiple concerns. Apart from the routine surgical risks,
the neurosurgeon could give no assurances regarding the outcomes of surgery at
such an advanced age. Faced with this catch-22 situation, the family opted
in favor of conservative management. They requested RB’s network for further advice
regarding the validity of their decision.
RB explained the need for further imaging to rule out the possibility of a stroke and other cerebral
causes. The family arranged for Mr K to be taken to the nearest city (120 km away)
to get a CT Scan (head) done. A subdural hematoma was noted and the neurosurgical
consult revealed a grim prognosis for the condition without surgery.
However, the surgery in itself posed multiple concerns. Apart from the routine surgical risks,
the neurosurgeon could give no assurances regarding the outcomes of surgery at
such an advanced age. Faced with this catch-22 situation, the family opted
in favor of conservative management. They requested RB’s network for further advice
regarding the validity of their decision.
From Bhopal to Boston, healthcare professionals chimed in with their inputs.
Surprisingly, they found evidence in favor of the conservative management of subdural
hematomas versus the surgical burr hole approach especially in the two sub-categories
this patient fell in – the aged population and in patients in whom a definite midline shift
was absent. 1,2 With an evidence-based foundation balanced by heuristic inputs, they formulated
a consolidated plan of action which addressed both the patients primary medical condition
(the neurological symptoms) and secondary concerns which cropped - infective cough,
irregular bowel movements. Figure 3 to be inserted here
Surprisingly, they found evidence in favor of the conservative management of subdural
hematomas versus the surgical burr hole approach especially in the two sub-categories
this patient fell in – the aged population and in patients in whom a definite midline shift
was absent. 1,2 With an evidence-based foundation balanced by heuristic inputs, they formulated
a consolidated plan of action which addressed both the patients primary medical condition
(the neurological symptoms) and secondary concerns which cropped - infective cough,
irregular bowel movements. Figure 3 to be inserted here
The patient’s primary care physician at the local level acted as the liaising link between the global healthcare
professional network and the rural patient, by using the evidence and data provided by the network and
translating them into point of care decisions. This plan of management catered to the needs of the patient
and balanced the concerns of the family with those of his treating physician thus providing patient-centric
personalized medical care.
translating them into point of care decisions. This plan of management catered to the needs of the patient
and balanced the concerns of the family with those of his treating physician thus providing patient-centric
personalized medical care.
Within a week Mr. K improved, having recovered his cognitive deficits partially as well as showing
improved functionality. He started ambulating with support and over the course of next few months
he could return to normal functioning – enthusiastically championing the causes he had undertaken.
In many ways, he was luckier than another patient of similar demography who had presented to the
UDHC network after burr-hole surgery to treat subdural hematoma. Unfortunately,
the latter sustained memory loss, speech disabilities, behavioral changes and physical limitations
and is now on a long and stormy road to recovery.
he could return to normal functioning – enthusiastically championing the causes he had undertaken.
In many ways, he was luckier than another patient of similar demography who had presented to the
UDHC network after burr-hole surgery to treat subdural hematoma. Unfortunately,
the latter sustained memory loss, speech disabilities, behavioral changes and physical limitations
and is now on a long and stormy road to recovery.
Till date, Mr K is committed to get the best of health care for his village and is revered for his efforts.
Delighted with the manner in which physicians across the globe had come together to solve his
medical conundrum, he is now one of the UDHC networks biggest supporters.
He also filmed a short video of his experience with the network which was aired as a part of a TEDx
event held in Kolkata in 2012.
Delighted with the manner in which physicians across the globe had come together to solve his
medical conundrum, he is now one of the UDHC networks biggest supporters.
He also filmed a short video of his experience with the network which was aired as a part of a TEDx
event held in Kolkata in 2012.
Dealing with clinical complexity: The rural Indian scenario
Indian rural healthcare system is handicapped by multiple factors, one of which is the ability to
deal with clinical complexities. In an overtly paternalistic environment, we usually end up sacrificing
the patients’ desires to focus on issues that physician caregivers feel are vital. The rural doctor works
under multiple stressors, one of which is lack of access to infrastructure to help reach a diagnosis
and another is lack of access to (and sometimes the skill to interpret and implement) customized evidence
Indian rural healthcare system is handicapped by multiple factors, one of which is the ability to
deal with clinical complexities. In an overtly paternalistic environment, we usually end up sacrificing
the patients’ desires to focus on issues that physician caregivers feel are vital. The rural doctor works
under multiple stressors, one of which is lack of access to infrastructure to help reach a diagnosis
and another is lack of access to (and sometimes the skill to interpret and implement) customized evidence
for a particular clinical problem.
With these factors in mind, these narratives show us a way out. Through the use of an online network
of connected physicians, the local generalist can “outsource” the problems of solving clinical complexities.
with Internet connectivity improving across the world, this is a reality. The mobile connectivity is improving
across India, even in the deep rural hinterlands. With ubiquitous access to mobile-based internet,
it might not be too much of a stretch to imagine a day when all physicians are connected through
the cloud-based virtual networks, which might act as a de facto Electronic Health Record for
each and every case clinical complexity encountered.
of connected physicians, the local generalist can “outsource” the problems of solving clinical complexities.
with Internet connectivity improving across the world, this is a reality. The mobile connectivity is improving
across India, even in the deep rural hinterlands. With ubiquitous access to mobile-based internet,
it might not be too much of a stretch to imagine a day when all physicians are connected through
the cloud-based virtual networks, which might act as a de facto Electronic Health Record for
each and every case clinical complexity encountered.
Taking the whole process of connecting the local physician, the patient and the hive-mind at
work online can be as simple as creating a secure website where individual patient details are encrypted
and stored before onward transmission to encourage a forum-like discussion to come to an answer
for the desired clinical query. This also has the benefit of monitoring the patient after he has left the
healthcare center and has gone home. In the days to come we envision such clinical narratives accompanying
each person, as a longitudinal assessment of his health and disease. With such a system in place,
no longer do we need to look at the patient as a fragmented diagnosis, but as a holistic individual.
work online can be as simple as creating a secure website where individual patient details are encrypted
and stored before onward transmission to encourage a forum-like discussion to come to an answer
for the desired clinical query. This also has the benefit of monitoring the patient after he has left the
healthcare center and has gone home. In the days to come we envision such clinical narratives accompanying
each person, as a longitudinal assessment of his health and disease. With such a system in place,
no longer do we need to look at the patient as a fragmented diagnosis, but as a holistic individual.
Conclusion: Criticisms and Way Forward:
While n=1 (or 2) is not the best of evidence to base a clinical decision, this narrative is meant to exhibit that patient centered care and shared decision making are not just western concepts. This also shows that a network based case management harnessing the expertise of specialists round the globe was not Utopian in a setting of apparent medical resource scarcity. However, as with any new system there are wrinkles that need ironing out, and niches that need to be explored.
For traditional physicians, prescribing for or advising a patient without personal interaction and clinical examination is an uncomfortable choice. But with virtual technology’s rapid progress, this can be easily ameliorated with a single on-site physician with a video/teleconferencing facility. Though this sounds complicated, in today’s e-world of video applications and ubiquitous internet connectivity, this is a rather simple step.
Also, ethical concerns about patient confidentiality remain and need to be addressed in accordance to the rules of HIPAA.
The bottom line is, user driven, patient centered healthcare allows us to reach out to medically deprived areas via the tentacles of internet/mobile connectivity which are easier to establish and facilitate. It also helps provide a secondary tier of medical expertise and evidence analysis to the physician at the rural level, who more often than not, is simultaneously burdened with lack of access to quality intellectual and medical resources and complex patient profiles. Access to a peer-network which can help ease this burden of care can be further developed as a decision-making aid for the health care professional (social worker or physician) at the ground level.
REFERENCES
- Adeleye AO. Non-operative treatment of chronic subdural hematoma: case report. IJNT. 2009 Jun;6(1):69-70 http://www.ijntonline.com/June09/abstracts/13.PDF
- Karnath B. Subdural hematoma. Presentation and management in older adults. Geriatrics. 2004 Jul;59(7):18-23. PubMed PMID: 15250192. Http://ssl-w03dnn0374.websiteseguro.com/sbn-neurocirurgia/site/download/artigos/article.pdf
Does our patient-centred care really meet human-centred care?
This was during my elective time in India in the late winter of 2017. It was a patient-centred learning opportunity for students around the world who has an interest in medicine. I was super excited about this because of my earliest clinical exposure to patient encounter as a medical student. I was excited to meet the patients, talk to them, and help them despite the uncertainty and emptiness in mind. I was uncertain as to what shall I do to make them feel better and how can I make a bond of trust and empathize with them. I was observing interactions of my attending physician Dr RB with the patients during morning rounds and in the outpatient care. I saw Dr RB spending for even over an hour after each patient, taking a detailed narrative history from them and digging deeper into the patient's life, the adverse consequence of that brought them to seek care. He was looking for medical cues, picking a very tiny detail in a history that would just be ignored by any physician in a busy OPD. This started instilling in me more confidence and encouragement to learn more-in-depth about a patient's’ life.
I was more fascinated when I got more exposure to patients and listening to their life stories, their survival, triumphs, and failure, their perspective and social life that influenced what they are and how are they functioning. The beautiful moments spent with the patients, their family members, their well-wishers. Being able to respond to the suffering of human fellow with empathy and listening to their comments, answering their concerns. Here are some of my interactive moment with patient quoted below:
→ A middle-aged man admitted in ICU with acute asthma attack was ventilated and developed hospital-acquired pneumonia after a few days. His son was very much concerned and while sitting outside praying for an early recovery, every day he used to ask for how his father is responding to antibiotics? When will his ventilator be weaned off? How is his pneumonia? Is he taking food? I listened to their query and concerns and tried to answer those. After a 28-days of lengthy hospitalization when he got discharged his son, and the patient said-
“After interacting with you, it was like someone was there who was listening to the concerns and explaining things so clearly about my health which made sense of hope that I can recover back. May God bless you for your help and please keep this care and dedication for your patients forever; they need it.”
→ One day I was following up patients in ICU and examining the patients. Suddenly an elderly patient called me from the back and politely asked me-
“Dear doctor, I am feeling cold and not able to tolerate this air condition. Can you ask someone to cover my body with a blanket?”
I replied, “Sure sir, I am doing this for you.” While after covering his body as I was going back, he whispered again and said to me with a surprise that
“Doctor, I didn’t think a doctor would help to cover me with the blanket. I am so happy that you did. Thank you so much!” He continued to tell that “would you mind if I share my problems with you?”
After I had nodded yes, he started getting emotional and happily shared his life problems and concerns with me. Before I would finish the conversation and leave him, he said, “May God bless you, doctor!”
→ A 50-year-old lady admitted in the ICU with altered sensorium after several times of severe vomiting. The patient soon after gradual recovery shifted to HDU. One afternoon, I went to encounter her, and at the end of the interaction, she was saying-
“Hey doctor, I am not feeling happy here, nobody is caring and looking after me as much as I would get at home. I have been asking for a shampoo packet, a toothbrush, and toothpaste since the morning, but nobody responded back. Can I request you to bring this for me tomorrow morning?”
Next early morning, I went to a shop far from the hospital and bought those for her. The untold expression through her tearing eyes after giving all those, made me realize and taught me that the medical care needs to be more human-centred. This lady a few days after discharge again admitted to the emergency department with the same complaints, but this time nobody could save her, and she died.
After all the interactions with patients, their family members and knowing their life story, struggles, social life, their concerns, and expectations in the care, I must admit and quote from one of my elective fellow Madhava Sai Sivapuram,
“I still remember the day Dr RB said everyone can learn medicine it is just understanding in a simple way and from that my way of looking at medicine has changed. And the part I learned from him is that to explain about the disease to patients or kins irrespective of their educational background in the most simple way possible and sometimes patients himself understands what he had to do.”
Being a survivor of a congenital heart disease and by closely interacting with patients and experiencing their life perspectives, their meaning of life, demand from the healthcare team, I learned that our approach to patients should not be limited to naming them just as subjects, case numbers, bed numbers, tagging them with their disease. Instead, we need to appreciate the empathy for our human fellows and learn that the care we provide need to be more of a human-centred that will allow understanding their expectations, their way of looking at life, the way they expect a care about, and care that will meet their full requirements. Meeting their requirements demand not just medical attention but more than that it requires care that any human fellow would expect from their son, brother, sister, wife or their family in any adversity of life.
Experiences of my BMJ Elective.
A whats app message has popped up on my screen showing a link about BMJ electives.
That single link has landed me in the different part of the country all the way from the south of India
to East of India which gave me a new perspective on caring a patient.
That single link has landed me in the different part of the country all the way from the south of India
to East of India which gave me a new perspective on caring a patient.
My undergraduate curriculum allows me to see the patients every day for 2 to 2.5 hours
(which includes history taking, Examination, Discussion, and treatment aspects of the patient )
The duration with the patient was very limited and I was not able to understand the patient
and his requirements, as there were only short interactions.
As a student, my definition of patient care is to getting a diagnosis and giving the management plan to them.
Under the guidance of Dr. RB, during my elective programme during the hot summer of May' 2017, (which includes history taking, Examination, Discussion, and treatment aspects of the patient )
The duration with the patient was very limited and I was not able to understand the patient
and his requirements, as there were only short interactions.
As a student, my definition of patient care is to getting a diagnosis and giving the management plan to them.
My perspective on patient care has changed.
Situation 1:
My first understanding on the very first day is I need to accept that He/she is my Patient.
I was on my 1st day attending the ICU for rounds along with Dr. RB there I met my 1st patient on
ICU bed number 7 and didn't realize it.
ICU bed number 7 and didn't realize it.
During our informal discussion that day, he asked me, "how was my patient"? I with an exclamatory
face asked him, MY PATIENT?? Yes, the ICU patient on the bed number 7. I told him he is your patient.
He replied to me, once you take care of a person, he becomes your patient, and it's your
responsibility to look after him.
face asked him, MY PATIENT?? Yes, the ICU patient on the bed number 7. I told him he is your patient.
He replied to me, once you take care of a person, he becomes your patient, and it's your
responsibility to look after him.
Often as a student, I was not trained to understand that he/she is my patient. I
was trained to see them as a diagnosis. The practice of accepting he/she is my patient has allowed
me to understand them, knowing them much better, and interest has instigated my brain to look after them.
was trained to see them as a diagnosis. The practice of accepting he/she is my patient has allowed
me to understand them, knowing them much better, and interest has instigated my brain to look after them.
Situation 2:
After my preparation of 1st blog, my BMJ elective peer Avinash Kumar Gupta reviewed and pointed
out there were more leading questions and no patient's story in it.
out there were more leading questions and no patient's story in it.
Again in OPD, Dr. RB takes 10 to 15 minutes sometimes extends to 30 minutes listening to
patients stories, sometimes an old age patient used to start his/her story from childhood and continue it.
patients stories, sometimes an old age patient used to start his/her story from childhood and continue it.
Out of curiosity, I asked why do we need to give so much time to know patients story?.
Patients' always needs to be heard this helps them feel comfortable and often helps us with
finding the cause of the disease. You will get to know better once you experience it, he responded with a simple smile.
finding the cause of the disease. You will get to know better once you experience it, he responded with a simple smile.
Situation 3:
Days turned into weeks, By the second week I noticed irrespective of the patients' background,
Dr. RB used to explain everything to the patient in a simple and precise way.
Dr. RB used to explain everything to the patient in a simple and precise way.
Does the patient require medical education? was wandering in my head.
Surprisingly, I happen to see a sense of satisfaction and relief when they found answers to
what was happening to them.
what was happening to them.
Case:
While I was in OPD, a middle-aged daughter along with his father who is on a wheelchair
has shown up for their review. The father had a fall two weeks ago.
After the fall, immediately he got admitted in hospital and received the treatment and
found out that he was having low BP. why he had low BP in spite of being a hypertensive patient was still a question.
has shown up for their review. The father had a fall two weeks ago.
After the fall, immediately he got admitted in hospital and received the treatment and
found out that he was having low BP. why he had low BP in spite of being a hypertensive patient was still a question.
In the OPD, Dr. RB has started with the patients' story we found out that during the regular visits
to the doctor, it was advised to control the diet and she misunderstood it as no salt in the diet
which has resulted in this condition.
to the doctor, it was advised to control the diet and she misunderstood it as no salt in the diet
which has resulted in this condition.
I could now get the reason for that smile when I asked about the importance of patients' story.
Now, he started explaining what diet is best for his father and cleared all the misunderstandings.
A lesson for me to know how improper patient education or no patient education may lead to
life-threatening situations?
life-threatening situations?
The above three situations and along with the case elaborated my perspective on patient care. Patient care includes understanding them, giving them the utmost priority, making them feel fulfilled, showing empathy towards them. Giving them a little more time and patiently listening to a patient helps us understand more and leads to better patient outcomes. Patients requirements are often too small but by addressing them gives a hope to live towards in this materialistic world with a humane touch of a health care worker.
Themes:
- i. Most of us practitioners are forced to practice defensive medicine more so because EBM remains so very messed up in heterogeneous studies that only create confusion than provide direction. Guidelines that way are a relief but they are not EBM really.
ii. in many parts of the world, "guideline-driven, thoughtless, "defensive medicine" often masquerades as medicine and gives it a bad name. Tragically the principles of "defensive medicine" (which is a parallel undercurrent born out of a fear-driven hidden curriculum) is utilized to serve as an excuse for being blind to the patient's true requirements because "the guidelines say so" and because defensive doctors are forced by their fears to think that most lawyers and litigants will not be able to comprehend more than that.
Shared-decision making philosophy:
"The best interest of the patient is the only interest to be considered"
This last sentence is from the 1910 Rush Medical College commencement address by W. J. Mayo, M.D. The full sentence included an important requirement:
"in order that the sick may have the benefit of advancing knowledge, union of forces is necessary."
“Patients and clinicians have different expertise when it comes to making consequential clinical decisions. While clinicians know information about the disease, tests, and treatments, the patient knows information about their body, their circumstances, their goals for life and healthcare. It is only collaborating on making decisions together that the ideal of evidence-based medicine can come true. This process of sharing in the decision-making tasks involves developing a partnership based on empathy, exchanging information about the available options, deliberating while considering the potential consequences of each one, and making a decision by consensus. This process -- sometimes called patient-centered decision making, empathic decision making, or shared decision making -- demands the best of systems of care, clinicians, and patients and as such remains an ideal.”
“Physicians have more expertise in medical issues, whereas patients have expertise about their own life issues and experiences. They may also have medical knowledge that should not be discounted. Unlike shared decision making which focuses on an event (the treatment “decision”), collaborative decision making is a process of engagement that seeks to devise an optimal plan of action. Also, unlike shared decision making, which focuses on the “medical” issue, the collaborative model focuses more broadly on the highest priority health-related problems that emerge from the confluence of medical and non-medical issues. That is to say, the resolution of these problems will move the patient closer to addressing the medical issue within the context of a much richer and complex life. Collaborative decision making, by using knowledge building principles, focuses on the “how” and not the “who” as decision models have previously done. Knowledge building, in this context could be defined as “…the social activity by which communities create new knowledge through a process of collaborative, iterative idea improvement.[18]” It is by engaging in this thorough process that decision making could start to shift to a more collaborative mode.”
Questions and thoughts around the Shared-decision making based for blending a multifaceted journey into one continuous experience:
- What shifts are necessary in our current thinking and practice to make shared decision-making a reality?
- What barriers are there to establishing shared decision-making as the norm in health practice and policy?
- How do we measure success – or the lack of it – in these contexts?
- What are the other philosophical and empirical research questions which warrant urgent consideration?
- What is the driver for patients to decide to share their deidentified data online (at the trade-off risk of getting identified by some) just so as to glean a few more learning points as to how best to manage their current illness?
- Is this "learning' driver visible in the innumerable conversations that dot the online healthcare countryside?
- Can we map the learning outcomes of such online patients to their healthcare outcomes? :
- Currently unpublished manuscript around Mr Kar's father can introduce the case scenario for the write up.
- Tamoghna can talk about his before after experiences as just mentioned [refer to his points below]
- Share the understanding and interpretation of JECP call.
- UDHC has tried to achieve shared decision making through asynchronous online interaction among multiple stakeholders in an individual patient's health journey, the problem still remains at the ground level where access/awareness is an issue.
- UDHC implementation needs to be more contextualized to empower the Indian rural primary care provider who frequently doesn't have either the necessary access to journals or the skills for literature search.
- Vast majority of our patient population in public hospitals is still not accustomed to the internet
- Privacy, patient confidentiality, HIPAA etc which I thought were of utmost importance even a few years back, doesn't seem to be much of a concern to our patients at the ground level.
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