The man in the black robe

Recently I saw how my colleague and friend Praneeth started telling engrossed how he remembers every detail about his patient that seemed important as per the patient in his/her life. “He is opening a new clinic, and is settling. He likes to spend time doing this, that etc. YZ had marital issues…” I realised he valued his patients as actual people and not patients alone and how good he is at it. While listening to his description, I remembered this poem of people spending time on their magic tricks and mastering it –

This was written in 2014 right after college fest in MBBS for our college magazine.

Do you remember the man in a long black robe
Wearing a tall black hat with the secret tricks inside?

The one who left the children awestruck.
The one who’d made us believe that people make wonders!

I see THAT magician today.
I see him in that “God” playing the veena like her fingers were meant for it.
In the one dancing on stage like he has infinite packets of energy in his body.
In him who blends the colors like they were waiting to be on the canvas;
in him who leaves the OT in bliss of having saved someone’s breath,
in that player smashing the TT ball like the world ended on that table,
that lady swimming like she is the queen of oceans.
In her who has tears of love for someone.

Imagine what the world would be like if it realised
that it could be the man in the black robe?!

I want to be in that world, to be the man in the black robe,
to spend all the energy on a magic trick!

 

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The man in the black robe

Let’s build a community

Exactly 2 weeks ago, I was asked by my mentor RK as to what I am interested to do. This post is an answer to it most of which was discussed and shaped the other day. I’m not trying to reinvent the wheel but this is what I want to do.

My philosophy and the reason behind me choosing what I want to do-

Health care and being healthy is everyone’s basic right. But in the real world, there are several barriers to this. And the barriers get stronger and complex with the addition of low socio-economic conditions. Thus creating health inequity among people.

I believe that if the barriers to quality primary health care is dealt, it would make a huge difference in narrowing this equity. Because, as the name itself suggests, primary care is the care that one must receive at their community, that’ll not only treat their health issues but also keep them healthy even before the issues occur. WHO defines it very aptly- “At its heart, primary health care is about caring for people, rather than simply treating specific diseases or conditions. PHC can meet the majority of an individual’s health needs over the course of their life.”

The specifics I want to do:

  • Understand a community from within to understand the barriers to primary care
  • Provide quality primary care to the community in the community
  • Identify the health problems of the community
  • Simultaneously study what interventions, processes, system changes can help in bypassing these barriers

And I want to do this in a systematic way with scientific methods, and participatory approach.

Why do I want to do this and why I’d be good at this?

Apart from the above philosophy,

  • I like being a primary care physician
  • I like and am good at working and interacting with the people in the community
  • I like participatory research approach, action and implementation research
  • I like systems thinking.

And the whole process of working with various teams for this is exciting.

Where would I do this?

I could choose a rural community, or an urban community with poor living conditions. For convenience and efficiency, I’ll choose a urban slum around our clinic at Shanthinagar.

How would I do this?

I would hate to be that person who starts with “I had this idea and wanted to do this, then I did this, then I’m doing this etc etc where the whole process and fun dies with I“. So I want this to be done with a perfect team that we already have with more people coming on board as and when required.

Also I’d want to involve the community in the process from the beginning so that the research is as much theirs as is ours. In the whole process, I’d love to see several trials of interventions, trials to make things sustainable.

Public heath system would be the key participant too.

This is the work I’d do with the size of the circles being proportional to my interest and time I want to spend.

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What are my expectations out of this?

At the end of this or even earlier in the process itself-

  • Several leaders emerge out of the community
  • Evidence as to what interventions work and what don’t will emerge to address the various barriers to Primary health care
  • The community will be empowered to access and voice their demands

Personally-

  • I’d learn hands-on several research skills
  • I’d be a better physician
  • I’d build and be a part of several great teams
  • I’d build a relationship with a community

Where are the funds?

I’m ready to write for grants, put my own little money, crowd funding, CSR etc etc.

Aren’t people already doing this?

Oh yes, they are. Dr Upendra Bhojani has even published his work in the KG Halli community which I’ve kept ready to read on my kindle. Just wanted to write out my mind before reading it. Also I’d love to get his advice on it.

What might be the barriers?

It could be anything. Not just health related. Will we be able to solve all of them? Ofcourse! with the right mindset and people, I’m sure we will be. Do I sound too ambitious? That’s because I am.

Let’s build a community

I am a part of the System.

I attended a talk this Thursday in the University of Trans-disciplinary Health Sciences and Technology by Dr John Porter about “Health Policy and Systems Research”. I was excited to attend this talk. After a chat over breakfast with my mentor Dr RK, which was coincidentally or not, about how I should consider applying “systems thinking” in the work or projects I’m currently involved in, we went to TDU. I was expecting to be one among a huge auditorium of audience. But it was arranged in a conference hall with around 10-15 seats. That was the first thing I liked about it! Everyone could get engaged in the discussion. Not that the audience was small, there were a lot of people connected through Zoom online from other places like IPH, Bangalore.

He started with the definition of “Health Systems” by WHO and opened up a discussion about whether the definition did justice to the terminology, what was appropriate and what was missing in the definition. When I looked up to write the definition that he displayed, I came across a number of them, signifying the constant effort by WHO to have an inclusive and best definition.

So in the “World Health Report 2000, Health systems, Improving performance”, it’s defined as “comprising all the organizations, institutions and resources that are devoted to producing health actions.” The definition that Prof. John put up was something similar. So in the discussion, one asked, “where are people in the definition?!”, I asked, “the definition doesn’t talk about the interaction between the organisations” and so on.

The recent definition on WHO website has tried to take care of these things: “A health system consists of all organizations, people and actions whose primary intent is to promote, restore or maintain health.”

Health systems diagram

Professor then explained how good health systems are crucial to solve major issues like inequity and how fighting the giant diseases like HIV, TB would be inefficient without it. He divided the health systems simply into hardware (the infrastructure, the technical systems, the funding etc) and software (the ideas, interests, values, norms and relationships) that made me realise how we underestimate the software part of this system when the whole system is connected through people and software.

He brought down such a broad concept of health systems to make it tangible in day to day life like, how values in our work place influence us, values of an organisation influences the kind of engagement in the whole system. How each person has the ability to influence the system and said “we are incredibly powerful”.

How something as simple (yet not emphasized) as mutual respect between 2 parties can lead to efficient systems. This was pointed out in a discussion about how AYUSH is facing difficulty in India by being expected to prove to the Biomedical Research giant in order to survive or be a part of the system. RK also pointed out that the whole struggle to prove themselves to the modern Medicine would be never ending just for the fact that its counter-intuitive and they both are separate entities who have to be respected mutually and exist without expecting to be validated by each other.

So, in one of the slides, Prof John mentioned the values that he believed in Health-

  1. For self- Dignity
  2. For the other-Respect
  3. Community – trust
  4. World – equity
  5. Whole – Social justice.

Then Dr Sunitha Srinivas from IPH asked this- even after several years of systems thinking, the community (supposed to be a major section in the system) still remains dis-engaged. What might be the block leading to this? To which he responded that even in the UK, though the health care is doing well, the community expects system to take care of them and not realise that they should be an active part in the system.

I wonder what would make people feel the responsibility to be a part of the system?If at all, there is a feeling, what ARE their responsibilities? So I asked him – “I’ve seen NGOs doing exceptionally well in engaging the community in the health system (because I’ve seen the work SVYM does), but when it comes to public sector, the community becomes passive receivers taking any shit. So is it because the scale became huge that the community engagement became tough or is it because there has to be better models (probably decentralised approaches) for this to work? ”

He smiled and said that this is a good question for a PhD and that one cannot decide how the community feels and that their approach is the right way to engage the community. So such HPSR (Health Policy and Systems Research) have to be done on ground and found out what works and what doesn’t. He gave the examples of Cuban health model and said that it worked great there, and something else might work in India.

That day, I decided with the probing and support from RK, that I love this way of thinking and promised that I’d learn and incorporate more of this attitude in the Research I’m involved in. So Prof John’s talk opened up many doors for me and helped me discover my interests. Thank you!

I am a part of the System.

Mini-Workshop on the minute molecules.

The first time I learnt something in Molecular Biology was the wonderful replication fork my Biology lecturer taught. We were introduced to genetic engineering and plasmids etc which I felt was “pretty cool” those days. And then, parts of it was re-learnt in Medical College and much forgotten after that.

But these days, I’ve been working closely with DNA and RNA as close as with the biologists helping me navigate through the experiments! We are working with viral RNA specifically dengue virus and HIV virus.

2 days ago I attended this workshop on Genomics at IISc, Bangalore arranged by Dr Rahul Roy,and Dr Chitra from NIMHANS, each of them have been contributing to the field of virology immensely. The things I learnt there were so exciting, I had to write this post.

This was the agenda:

photo_2018-09-29_10-08-32

With Dengue viral genome as an example, we went through the whole journey of next generation sequencing. From the process of viral isolation, library preparation to sequencing and analysis of the data generated thereafter.

We were asked to take our laptops the previous day to get a software installed – VirtualBox, an open source software that supports the creation and management of guest virtual machines running different operating systems. This was required as all the good tools and programmes that help in analysing the huge data obtained after sequencing genomes are open and free software based and work best on Linux OS with linux terminal (where commands are put). VirtualBox would help to work on a virtual machine with linux OS on our laptops even if they had windows. The organisers had created a nice package with sequencing data, all tools required to analyse it which was also copied to our systems. Since I recently moved back to my decade old laptop (due to breaking my new laptop in a stupid incident at the metro on one of my initial days trying to navigate Bangalore like a pro), I couldn’t get this virtual machine running. So I was kindly given a Desktop that was much more comfortable, fast and huge.

We were a small group (kept intentionally small) of 12 participants from different centres (NCBS, IISc, MSCH, NIMHANS, JNCARS, St John’s Research Centre etc) who were new to next generation sequencing, but eager to work on or the work required learning the same. With the intention of making our work easy, this was arranged with hands-on training in dealing with the data with due personal attention.

Recently I worked with a post doc who was running nanopore sequencing for a sample to see if any unusual pathogen would be obtained. It was my first time. So all day we prepared the library and late in the evening we finally put it for sequencing. I was expecting the sequences to be read and results obtained and my curiosity quenched that night. But I was wrong. These technologies generate “reads” that are a collection of bases which have to be then “called” for it to be visualised as bases “A,T,G,C” by us. This is taken care of by the software. Not a problem. But the problem is these produce a million of such reads and one can’t manually analyse them all. It contains contaminant DNA including host and other organisms with our genome of interest hiding. Smart people have figured out ways in which we can clean the data, remove poor quality reads, reads that are of adapters etc. ( using trim_galore tool). Also these sequences then have to be assembled (using some kind of logic or algorithm) to get a complete genome. We need to be careful to put the right pieces of the jigsaw. This, is again taken care of by a tool called – SpAdes.

Once we get a genome, we need to see what it maps to ? Is it dengue? Is it Chikungunya? or is it disappointingly host DNA? If we already have a pathogen in mind, we’ll align the above obtained sequence with a reference genome using BWA (Burrows-wheel aligner) and see how many of the reads map to it.

Later we were shown how this could be done on a GUI (Graphic User interface) software – Geneious which was kind of easy to visualise but killed the joy of giving commands and getting results fast as it required great amount of RAM. Also such softwares are not free in terms of cost as well as license. We were also introduced to creating sequences to submit to the GenBank, a database where all the sequences are noted which can be used by researchers all over the world. Last interesting bit was about creating phylogenetic tree to see what mutations have passed, survived etc.

If I have to list 2 main learnings from the event and thank the organisers for-(apart from the core principles of sequencing technology)

  1. Importance of free and open soft ware- as better tools can develop only if this culture is encouraged.
  2. I can use Linux and also learn a bit of coding (useful for R and data analysis now that I’m dealing with a lot of data)
Mini-Workshop on the minute molecules.

I now know a tribal

So he was sitting up wide awake at midnight. I asked him, aren’t you feeling sleepy? Is anything the matter?

To this, he gave me a toothless huge smile and said, ” I am a farmer, without straining and working in the day, and without tendering to my goats, I won’t be tired enough to sleep.” Struggling with the knotted oxygen tube and drip sets, he continued “You can’t expect me to fall asleep when I’m lying down the entire day. I’ve to go tend to my goats. ”

Later that night when he was half asleep, I found him with the oxygen mask put over his forehead like he was lying on the sand with sunglasses for style. Me and the nurse there were trying to wake him up and say “oxygen hakoli” (put the oxygen mask on). He heard it as “koli” and started looking out for his running hens! We had to calm him down to sleep. That’s the last I saw of him. The next day we referred him to a higher centre as his BP was being under control only under continuous GTN infusion and his Left ventricle was probably in big trouble. But that didn’t matter to him at all. All he knew was he was very breathless 2 days ago, couldn’t do the daily work he used to and so seeked help. Now that he felt better, he would be happy to go home if we’d allowed him to.

I’ve noticed a sense of freedom in these people. The life they lead have minimal rules. They stick to what they want, what they like. Not what people tell them. They live in the moment and the next. Nothing beyond. If I live, I do. If I don’t, so what?

They have so many lessons to teach.

The other day, a mother was attending to her young daughter who was admitted with almost all nutritional deficiencies that I’ve probably read about in my medical school. So while we were rehabilitating her daughter, we enquired about her other children and asked her to bring her younger son to the hospital so we could just do a general check up and rule out possible deficiencies in him too. Very logical and responsible thing to do as a public health clinician. Just the way we screen the family of a patient diagnosed with sputum positive pulmonary tuberculosis.

To this, the mother said, her 9 year old child wouldn’t want to come as he feels well and has no problems. So I insisted her to bring him hoping it’s she who makes decisions for him like any other mother would decide for her 9 year old! But she was serious in telling me that he really wouldn’t want to come and how she can’t force him to come if he doesn’t want to. It’s his wish.

Such autonomy! I don’t think even adults of my age have such autonomy. I couldn’t argue with her about this. “If you want, you visit our house and meet him!”, she invited me. This is still a pending invite. I’ll probably visit them in their house. It’s been long since I saw the girl as well.

Their social and emotional behaviour is something I find fascinating. For eg,

There’s a warm teddy like lady who loves everyone at the hospital. She brings and accompanies, any one she recognises as sick from her and her neighboring haadis. She can spell our names in English and says “I’m fine madam” whatever be the situation at her home. She takes our contact numbers and calls us just to know how we are and say hi to us. She has a rule of staying about 3 ft away from us and smile at us but never look us in the eye or allow us to touch her. She probably has some kind of Autism but nevertheless she’s a dear to all the resident medical officers!

They don’t connect with you unless you make a genuine effort to do so. Like they have a radar or something to tell them if a person is true or not. But once they do connect, they would love you and remember you, expect from you like they’re your children. And be angry with you if you don’t fulfill their expectation.

I’ve connected with a few people in the past year. I now recognise them.

I can tell if one’s a tribal or not by just taking a deep breath inside her taayi card. It smells of the firewood they use for cooking. I like that smell. It tells me about my patient.

I can now tell what is important for them. This has taught me great lessons in my medical practice. It re-emphasised the importance of patient centred approach to problems. To learn to recognise what they expect and not get carried away by the diagnosis/treatment options.

Also because they have so much autonomy and don’t easily agree to anything, it has taught me to involve the patient and the family in discussing the treatment options and further plans. In the initial days while I was put in charge of patients admitted under General Medicine, I was taking care of one of my first tribal patients, a young lady with fever and severe anemia, who had a mass in her abdomen which was yet to be diagnosed. I remember a lot of discussions were happening, cross references between different specialists etc. But I’d missed a major link which was later pointed out to me well by Dr Dennis, the doctor in-charge of the tribal community from where she came and who had developed immense connection with the family. The link I’d missed was the constant communication with the patient and her family regarding what was happening and the honest discussions regarding our diagnosis, plan of further investigations etc. That is when I learnt to communicate and take consented decisions not only for legal purpose but to give the patient the autonomy.

I’m happy to have gotten to know these people through SVYM. And will be grateful for what they’ve taught me.

 

photo_2017-08-14_19-14-24
One of my favourite kids.

 

 

I now know a tribal

A few months..

When you have an amazing doughnut, the first 2 days you’d have intense thoughts about it. But as the day becomes 3 or 4, it would become subtle yet remain as a good feeling which would stay the same forever. Errrmmm.. Until maybe you eat a rock – consistency, old doughnut from a nearby bakery. But you’d know it’s the bakery’s problem. Your lovely doughnut still has a place in your mind. Fresh and good and delicious.

“Awww, your baby is cute. How old is he?”, he asked. It was right at the tip of her tongue “just a few days” but she took an extra minute to think and calculate it accurately as 2 whole months! Because the feeling for her baby reached a stagnant level at “a few days”. The baby was still as fresh and lovely as a few days old one for her. And she loved him like he’s that old.

So I thanked the calendar yesterday. Because suddenly it made me realise that it’s been 2 yrs since we lost dad. For me the time has stopped at “its been a few months”. Just like the feeling we have for a doughnut remains unchanged after day 3, this one stays unchanged after “a few months”.

I guess the time line for emotional memories don’t fall in line with that of the “real” calendar. And it would be wrong to expect it to. If it did, we’d be less human, deprived of so many wonderful feelings and memories that shape us.

A few months..

That Moment

I saw him reaching out to her to hold her hands. He didn’t blink once. She looked like a child to him at that moment. Was it because of the checked school uniform like shirt and pant she was wearing or because he felt a lot more older. He remembered all the times he had with her, I could see. The good times and the bad. He’d held those hands several times. Once even with anger. But this one was different. We all knew it. He knew it. She did too. He felt sad and worried to leave her. After all she looked like a child to him. How will she manage without him he wondered. All this I could make out by just the gentle stare he had on his face. No words to miss interpret. No actions. Just the touch and the silence. He had been talking all night trying to express his worries or just talking because he had no worries. I had difficulty in making sense of the words. But this silence was crystal clear to me.   

He had a sense of peace and anxiety at the same time on his face.  

Whether that was the last time he was holding her hands he was not sure. Nor was I. Yet we knew that we were trying to race time in vain. Days had flown by and started getting less and less uncertain.  

What happened before or after that touch mattered little to him.

“I wish I could turn back the clock and bring the wheels of time to a stop” I thought to myself because I wanted him to have that moment again and also because what came next did matter to us.

That Moment