What it means to wear the lens of health equity

Past few months have been rich with workshops. Tomorrow I'm looking forward to another one "Good Health Research Practices (GHRP)" by WHO-TDR. Before attending this I thought I should capture my reflections from the recent workshop on Health inequities research that I wrote in my previous blog post.

I always say I believe in Health equity. The 5 days of workshop really challenged me to understand what health equity meant. And how is it different from health inequity and equality. Hence I'm writing here to reflect on these through some discussion that happened in the workshop. 

Health equity is probably hard to define, but easy to define as absence of health inequity. But let's explore more.

There were two stories that stuck with me through the workshop and a few personal stories to share:
In the piece "What killed Annette Jean" in the book Infections and Inequalities by Paul Farmer, he describes the way a young woman less than 20 yrs old in Haiti died of massive hemoptysis (blood on coughing) because of untreated Tuberculosis. During this event, her brothers had to take her in a home made stretcher walking down the hill for more than an hour to only be told that she was not to be saved. Which year was this? 1994! This is a year when probably anyone reading this would have been easily diagnosed if had TB, treated and cured. So what killed Annette? A few might say their "negligence" or "ignorance" of the disease, their distance from the health centre, her gender etc. But what made her not seek care? or seek it only at a later stage? Why hadn't health care reached her? Blaming the patients for lack of awareness and ignorance is just a way of dealing with the issue in a superficial manner and hiding the underlying invisible unfair, unjust inequities that exist in the society. Is hiding a way of escaping from the invisible tougher reality of inequities? Are we in this process normalising injustice and forget asking deeper and provocative questions?

Another story of a young mother in Gujarat who was 8 months pregnant with labor pain who had to travel more than 190 km in 5 days in auto, bus, by foot, etc  starting from the day the pain started from one health facility to the other because each of them referred to the next and the family finally lost her and the child. Who's ignorance can be blamed here?!

These may seem like extreme examples but these are happening as I write in several parts of the world. But is it happening just next to us? In our own practice? Ofcourse, I see it in my daily practice and I'm sure you do too. On one hand a person who needs to make sure they're healthy gets all the tests possible (necessary or otherwise) while on the other hand another woman I saw on the same day had no money to get her sugar checked to monitor her diabetes. While a transgender person though might have the money to access health care, faces disrespect from the society and family making them not care for their health. A lady who is quiet well to do, working has no time and mindspace to take care of her health because she has to put her family, and parent's well-being first. We see this in our families, in our practice, in the society. All these are representations of inequities. Questioning them as unjust/unfair and avoidable is what it means to wear the lens of health equity. "Avoidable" here is very subjective, what may seem avoidable to one may seem unavoidable to the other. But avoidable here means all those inequalities that arise due to unnatural causes, societal causes, social hierarchies though may seem difficult to avoid must be considered avoidable. Because it's about human rights and justice we are talking about. Not whether you or I can solve this! Are all inequalities unjust? Not exactly. If the inequalities exist due to natural causes like aging, biology, they are unavoidable and are not unjust. They are mere inequalities but when they are a threat to justice, it becomes inequity. Here's an article that tries to define health equity in a very nice way. https://jech.bmj.com/content/57/4/254 (was shared as a resource by the workshop team)

Isn't this just social justice? It probably is. Isn't asking this just being a good citizen? Ofcourse it is. And health care professionals dealing with lives more than anyone else have greater responsibility and power to question these.
How do we question these?
It could be by advocating for your patients, by writing articles, by sensitizing people on the matter, through research, through questioning the accountable authority, a mix of all of these-  research, activism and practice. For eg, in the above example of the mother who died a adorable framework was asked to be used to find what caused the equities and the situation that resulted. We had to assign the various gaps as "Science/technical, Systems, Social, and Rights factors" (SSSR) and recommend what actions can be taken to fill these gaps and by whom? We were given a group reading activity as well to understand these inequities about which will be in the next post. Why do we need to understand these inequities and the pathways that lead to it? So that it gives us an insight into where we can work on and how to reduce it. Dr Devaki mentioned how the pathways that lead to inequity and equity might not be the same but it's important to understand one in order to work towards the other as they often have similar milestones or cross their ways.

Workshop on cutting edge research on health inequalities: Concepts & methods. Day 1 Power Walk

In September with much enthusiasm I had applied for this workshop conducted by HENI, George Institute for Global Health, Azim Premji University and Heal. I've written about my application in my previous post. This is the first workshop I'm attending with "Health inequities" as the main concept under discussion. Ofcourse other workshops and seminars at IPH are always talking through this lens including the recent workshop on Realist Evaluation. 

Today was the day 1 of the workshop. It's a 5 day workshop at Visthar CRC and we are provided accommodation for all the nights so that we can spend enough time with everyone and even as Bangalore residents not worry about commuting daily. I took an auto and reached well in time for the lovely breakfast.

Like the name of the place "Visthar", the discussions and people participating in the workshop were also quite diverse and multi-dimensional. Workshop started on time by 9 am when we were seated in a semi-circular warm fashion. Introductions of the main speakers of the day Dr Arima Mishra, Dr Devaki Nambiar and Dr Tanya Seshadri followed by participants were done.
I was delighted by the diversity of the group in terms of their background, the current organisation, work and communities they work in. We were a little more than 20 participants, and just to depict the diversity, there were social scientists, people from law background, journalist, Anthropologist, from companies, George Institute, Centre for Equity studies, professor at a University for public health, ICMR, TDU. People working with tribal communities in various places, rural communities in Bihar, for maternal health in Orissa, homeless people and migrants in Delhi, LGBT communities in Chennai, Bangalore (that would be me) other communities in Kerala, Pune etc.

Following introductions, we had a cool exercise facilitated by Dr Renu Khanna called "Power walk" (also known as Privilege walk I guess) where we were each given a slip with an identity and we were made to stand in a horizontal line and take a step forward only when the facilitator read something that we thought we as the given identity could actually do in life. I was a 14 year old school boy. So the statements made were like, "I have access to 2 meals a day", "I can read the newspaper everyday", "I have access to information regarding TB and HIV", "If my parents were to die, I would inherent their property/have rights to their property" etc. I had to add layers to my identity  in order to decide whether I could take a step forward to these statements. So I added that I go to a Government school in a rural area. By the end of the walk we were all scattered with a few reaching the end, a few having not taken any steps at all and most in different levels of middle area. We then discussed about how these inequities played it's game. How each of the layers influenced the person to be more or less privileged (concept of intersectionality) How we felt being left out/going ahead, how our own biases and stereotypical thinking influenced our steps. Like how we assume that a woman though being a police has less privilege.

We then had lecture 1 on Intersectionality by Devaki Nambiar and lecture 2 post lunch on Concepts and frameworksby Arima Mishra and Devaki. To read, follow the next post.

  

Real Governance and Democracy

One of the days, at SOFA, we could observe a workshop that was conducted for the village men and women (I think farmers mainly). About 20-25 people were part of the workshop. This was one of the workshops that THI has been doing since a while in order to improve the awareness on Gram sabha structure, functions, democracy, governance and how they can participate in it. This was conducted through members from the Barefoot Academy of Governance. When we joined in the middle of the workshop as observers, we saw that the participants had badgets with their names written in Tamil on their chest. They were split into 4-5 teams and 2 people from each team came up and spoke about the problems that they think are faced by Sittilingi should be prioritised as well as the solutions that they could think of. They had charts in which they had even listed these. Toilets are constructed but most are not working..wild animals destroying their farm, they need a bank in Sittilingi, water, etc

I found this fascinating and very engaging and isn't this what democracy should aim for? I hope their meeting in actual Gram Sabha goes well!

Conversations with Gi and Tha

I've tried my best to capture the learnings from our conversations with Gi and Tha here. (Note that the statements are not quoted but are reflected from my learning)

While we were having conversation with Gi, he got a call and then he took us with him to SOFA (Sittilingi Organic Farmers' Association) in his car where they were showing the documentary of Tribal health Initiative to a group of people from Teach for India organisation. The documentary is partly here.

The above part of the video also covers one of the major messages I took. They talk about a man who had fractured his finger and how they talked to him about fixing it with a small procedure. In that conversation when they learnt that he wished to go to a traditional healer who would immobilise the finger and probably some additional techniques, they told him what that might cost him. His finger might not get straight and that he would remain with certain amount of restricted mobility. He was okay with these consequences and hence they agreed to not do any procedures. Patient preference and shared decision making to it's fullest!
This portrayed several principles-
1. Keeping patient at the centre and doing the rest with the intention of getting him/her better is the first thing. This approach helps in dealing with our internal inconsistencies with our notion of what is right and what we think the patient wants compared with what actually the patient wants.
2. Having a healthy working relationship with all providers as much as possible to bring the best to the community. In the above they didn't blindly object him to not seek care from the traditional healer but told him the consequences.

Gi was also later telling us how he dealt with the healers who go on vehicles and give injections. To avoid transmission of infections, they helped the healers in at least using fresh syringes and needles. 

Post the documentary, members from Teach for India interacted with questions posed to Gi.
When asked how they (Gi and Tha) dealt with disappointments when certain things didn't work, he narrated how they had to be persistent for 2 years with several meetings for 4 farmers to join in together to start organic farming and now they are 500 members running this association of organic farming which has helped them have better crops.
Being open minded to different solutions, coming from anywhere is something they follow. For eg, they had initially trained young girls from the communities as health workers so that they could care for their community. When they learnt that the community were not accepting the advice from these young health workers due to their age, they shifted their focus on training the elderly. Also the young girls became excellent health care professional at the hospital. They do everything!
So the shift from solution focused thinking to problem focused thinking is what kept him going, trying new things, taking on new challenges and solutions.

How he chose that community to work-
Gi and Tha wanted to work at a place where people needed them the most. Since they already were familiar with Tamil Nadu, they listed 5 places that were back then very poor in terms of health and health care access. They planned to visit each of those places and decide on one. Sittilingi was the first in the list and they fell in love with that place. Honest and practical answer :)

I later asked him, how he deals with the fact that there are several communities like Sittilingi out there who need this but he can't reach all of them.
He simply replied saying that time would teach us that. When we start out, we have the attitude of "I will change the world", but world can be changed bit by bit, block by block by several people I guess.

How do they find enough time to do all the things they did or were doing? Like seeing patients, talking to farmers, etc
If the purpose is clear and work starts, adrenaline would just let you work and somehow make time for everything.

How did they manage to have enough money for personal life?
He described how people doing such work often don't expect to make a lot of money. He was explaining how if one doesn't have a major financial commitment like taking care of parents, loans etc, one then need money only for one's survival. And while doing such good work, things often fall into place. Basically at least to start with such journeys, we need to be open to expecting time when we'll be making just enough money to survive. Which is alright. Risks are to be taken. He gave us the example how when he tried admitting his sons to school with a substantial fee, the school administrative waived off their fee due to the good work they were doing.
So money will always be a problem and with good will solutions will eventually come our way.

He asked me and Akshay to think and discuss amongst ourselves about what each of us would want to be doing in life after 10-15 years from now. Where we'd be living, what work we'd be doing etc in order to have clarity of each other's space, synergies, strengths and to understand each other.

Interesting conversation about whether we need to do postgraduate degree-

The approach that he takes is that any training and learning adds to the skill set of oneself and thus will only benefit the people we are serving. So learning and getting degrees in fields like surgery, obstetrics, which are of much need in communities would definitely help you serve better. It will also help us to be safe from legal regulations present or those yet to come. While certain other fields like medicine usually doesn't require a degree more than MBBS for regulatory purpose. But an attitude to learn anything and that it's possible to learn anything is much needed. To decide on whether one wants to take PG or not, one has to decide on how deep he/she wants to get into treating patients or clinical medicine. This is something I'm thinking about.

Speaking of learning anything, the approach that he took was based on the need. So Gi said he learnt how to do ECHO and recognise basic heart diseases when he was 59 because he realised that they were referring quite a lot of patients only for this; He learnt how to do ultrasound, even did a certificate training to be legally safe in order to benefit the community. In fact on the OPD day we got to see him scanning.
I loved that they continue to be in OPD, practice, and still are involved in all the other activities, administration, and social aspects.

We caught a conversation with Dr Lalitha (Tha) on another evening at Porgai (meaning "pride" in Lambadi language) and here it is-

How did she decide that she was ready to stick to Sittilingi and work in one community for such a long time?
She gave a very genuine perspective of how in her generation people were expected to and were even judged based on how committed and long they worked at one place/job. That was the norm. But the recent generations she has seen have a lot more interests and often jobs don't offer space for all of them and thus fail to keep them and hence people explore and move to different places/jobs after 1-2 years to explore further.
All she knew is that she wanted to work for a community. Once she got into it and started working with them, she realised it takes one's lifetime to bring about transformation. And communities also grow with time. Their needs change, old problems are no more problems, there are new problems envisaged or not. So there are always new experiences and mindset required for growing with the community, recognising these, accepting these and thus she finds it interesting.

She said certain consequences have to be thought of and made peace with. Letting go of some interests that may not be possible to continue..dancing..singing..etc that doesn't find space.

How she decided that she had to get a degree in Obstetrics?

Initially due to the gender expectations, people were expecting her to take PG in OBGYN and she clearly had resistance to this attitude. But later when she realised maternal health was such an unmet need, she pursued it with an internal drive and desire. Resisting the resistance she had before.

She has a very warm perspective on child birth experience and encourages even assisted home delivery but "Safe delivery" is what she thinks should be endorsed.

When the current health system brings frustration, how does one decide whether to fight the system or just continue to work around it through our own ways?

Fighting the system is an ideal thing to do and she often feels frustrated that their response to certain political events are passive. But she also said that when an organisation becomes a part of the community, it is no longer about personal interests alone but decisions have to be taken collectively. Also that such rights based approach usually needs to be done from the beginning. Instead of Either or approach a combination of these efforts are needed. You can't expect a community who aren't even getting their basic life necessities getting fulfilled to spend their effort in only fighting for their rights and demand accountability.

She encouraged us in our endeavors, gave us a warm hug and asked us to visit them again. While we walked with her in darkness and a torch to her home, she described how safe  Sittilingi people were from each other. As in, she has not locked her main door in the last 16 yrs. She can trust people, but this is changing. But as stated before communities grow, change, we accept the new developments and also new problems.

Next morning, we wished Gi, met doctor Jerry and left Sittilingi with a lot of contentment and inspiration.  

           

Journey to Sittilingi

We caught the bus in time that left Puducherry at 5:30 am to reach Thiruvannamalai. 2 days before this we contacted Dr Regi George (Gi as he is called) to see if we could meet him and also stay at their hospital. He was very welcoming and told me in detail about what bus we had to take, and what bus to take if we missed one of them. It's also described here on their website.

We used google translate tool to decode the tamil boards on buses. I learnt it only this time. It's quite efficient. You take a picture of the text and select on google translate app and voila!

From Thiruvannamalai, we had to take the bus going towards Salem but one that takes the route through Naripalli and stands at a different place than other buses to Salem. We caught a bus called Sumangali going towards Naripalli but later realised it wasn't going to Sittilingi. Nevertheless we got down at Naripalli and decided to figure out our way.

I'm happy this happened because we got to interact with an elderly lady with her grandson and a elderly man (not sure if they were related to each other). She had taken the boy to see a doctor at Salem because he had developed cellulitis of his fingers after an insect bite. We told her that we were doctors going to Sittilingi and both the lady and the man made sure we got into the right bus. Meanwhile she showed all the medications that the doctor had prescribed and I communicated using google translate and translate from Akshay who knew koncham (partly) tamil.

We reached the tribal hospital that afternoon.

At lunch in their canteen, we met a young doctor who had just finished pulling out a baby through C-section in OT.

After lunch, we got to meet Dr Regi (Gi) who along with his wife Dr Lalitha (Tha) started this work at Sittilingi in 1992. Told him about ourselves and our current work and interests and the intention of the visit.

There began the conversations that blew and widened my mind. Have you ever felt this when your thoughts are being broken, barriers being brought down and felt like your mind just expanded like alveoli with fresh gush of oxygen? The feeling was this to be precise. Conversations with Gi and Tha deserves a separate post.
That night Dr Palani, a young doctor was kind enough to take us to the guest house in car. Oh, his blog is another lovely piece to follow.

Next day, we got cycles for us to go around Sittilingi.



We even went on a nice morning walk through the fields

Riding through Puducherry

On the second day, we rented a 2 wheeler for a shockingly inexpensive amount of 250/24 hrs. That morning we drove to Auroville.
Watched the videos on how Auroville started after "Mother" who was a staunch follower of Aurobindo's ideals and how Matrimandir was built over those years.
The idea and philosophy really caught me. I liked the idea of the dream:
"There should be somewhere on earth a place which no nation could claim as its own, where all human beings of goodwill who have a sincere aspiration could live freely as citizens of the world and obey one single authority, that of the supreme Truth; a place of peace, concord and harmony where all the fighting instincts of man would be used exclusively to conquer the causes of his sufferings and miseries, to surmount his weaknesses and ignorance, to triumph over his limitations and incapacities; a place where the needs of the spirit and the concern for progress would take precedence over the satisfaction of desires and passions, the search for pleasure and material enjoyment..." and so even bought a poster of this and is now on our wall.

Their idea of life long learning, and teaching, progressing is commendable.

Walk to Matrimandir was fun. Having small stops to sit and chill, clicking pictures and pouring water on top of my head and inside my t-shirt to cool myself is how I spent the time.

That evening, we rode to Chinnaveerapatnam beach. A less explored beach where we could play heartfully in the water and had nice sea food from an amma who let us make this video as well.



Upon playing this again, I can smell it and mouth starts watering.
That evening ended with a nice ride back to guest house. At around 7:25 pm we attended a meditation session at Aurobindo Ashram. It was as quiet as it's ever been. People sat in dark in whatever posture and wherever they wished. No instructions and no rules. Silence was the only rule. For 45 min, I sat there. First concentrating on external sounds, thoughts, someone walking, then tried concentrating on my breath. As hard as it was I went back to my idea that meditation might mean different to different people. We can choose what it means to us. I often take the easy route and imagine myself being outside of me. And then look at the thoughts that way. This time helped me reflect on certain problems and decisions I was struggling with. Was quite an experience. During the whole session, I was afraid that Akshay would have been in deep meditation and was thinking of how to disturb him. Looked like he was indeed in deep sleep :P

That night we walked and sat along the beach because, well, it's one of the only things you do in Pondi.

Next day we visited some more places, Aurodhan art gallery where photography was on display, Aurobindo hand made paper factory where we could see the various steps with fascinated eyes. https://www.pondylive.com/ is a website that gives info of the events, shows, galleries happening in Pondi at the time.

We had an expensive lunch at a French Restaurant, Crepe in Touch.

That night we gave back the two wheeler and took the early morning bus to Thiruvannamalai for our next destination.

Sea and sea food

Reached in time for the sun rise in the east coast in Pondicherry on Sunday morning. Hungry and dehydrated after a 2 km walk from where the bus stopped. Thanks to Varsha who had mentioned about Aurobindo Ashram guest house which provided accommodation for a reasonable cost. Though there is restriction of being back in the house before 10:30 pm, we found it suitable for our plan. It's funny that when I looked up her blog to link it above, I saw that she is off to Sikkim at the moment.

Pondicherry was hot and humid, and me being a person who turns off the fan each time someone turns it on in Bangalore, had the fan running in high speed and yet feeling the heat.
That morning, we had yummy omlette and dosas at a local vandi which later became our breakfast friend for the next 3 days.

Once we settled in the room, got some good sleep that I had lost in the sleeper bus while treating a patient in my dream the previous night.

Akshay's brother, Ajay joined us from Chennai that noon though he had an exam on economics to write a day later.
We had got a suggestion from Aji and Riya to eat at fishaurant and we did the exact thing. I think to get the feel and sense of a place we need to savour the local food. And what's sea without sea food?! For those who know me, I have a complicated relationship with non-veg food. I love chicken but I choose to eat it very rarely. (only when it's going waste after a friend orders it :P or when I'm traveling and want to experience everything possible) This is not because I'm born to be a vegetarian but because once I saw a bunch of hens waiting to get butchered and ever since feel sorry for them. But sea food? Hmm..they are plenty in number, small in size don't really make me feel sorry. At fishaurant we ate everything. Prawns, fish, squid, crabs. All three of us were eating crab for the first time. You can imagine the amount of confusion and embarrassment we were in. At first Akshay ate up the entire crab leg from his soup with all the hard parts while I was telling them that some parts are meant to be removed. We took the help of the waiter and the chef to understand how to eat the crabs. We crack them in the mouth and eat the parts that we can and spit the hard and intuitively non-edible parts. Simple. Serving these creatures as whole enables mindful eating I guess. Anyway, that was a seaful meal ending with elaneer payasam with tender coconut chunks it it!

We had bought a Pondicherry tourist book with a map attached at the end from a shop near Fishaurant to help us decide the places we wanted to go and Akshay took charge of the navigation using the map like a sailor.

We first visited Mahakavi Bharathiyar Memorial Centre, a poet and social activist I hadn't heard of before but who wrote very progressive poems, articles in papers, about almost every social and political issue. About how women need to be thought of as equals, how one must not marry young, about how caste was ruling and making it practically anarchy, etc etc. Very inspiring. We weren't allowed to click pictures of these writings. We then then went to Bharathidasan museum preserving the work of another such poet with progressive vision who was inspired by Bharathiyar. Their houses were within 500 mts but they lived in those houses at different times :)
One of his poems talking about equality of gender he wrote,
"the cradle will swing, no matter who rocks it" made me really smile.

From there we walked eating ice cream on the long stretch of Goubert Avenue and street. The main street along the beach. We sat for a long time on the rocks along the beach. There is something mesmerising about the sea. It connects people, collects stories, brings out thoughts, reflections, decisions, smiles and serenity. One can spend a lot of time with it and still feel it inadequate. I was thinking about how the tsunami waves might have looked and what feeling it would have brought to the people witnessing it. *Chills*

Ajay left that evening back to IIT, Chennai and we ended up eating all the street food that our tummies could take. One vandi is worth mentioning because of how attractive they had made their business. They had stuff being grilled - chicken, prawn, paneer, potatoes and a bike standing to display their menu on a board which was wonderfully lit with tiny lights, and many dogs to feed the left overs. They had battery backup, freezer to store a lot of meat and a crowd to finish that up.