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.
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.
After reading your article, I felt compelled to ask (and reflect on myself) the following questions:
ReplyDeleteIs the fundamental idea of inequity towards any being bother more inequity bothersome or the idea of inequity experienced by different people or groups in comparison to others?
Also, when we work to address inequity, do we do that primarily to address our own inner angst or do we do that primarily to reduce someone else's angst?
The answer could come from Communism-Marxism. But there is no need to go that far. The Preamble of the Constitution of India itself embodies the spirit of health equity - through the key words "Justice", "Liberty", "Equality", and "Fraternity".
DeleteThe meaning of these words in the context of equity has been discussed very beautifully in https://indiankanoon.org/doc/18096795/ I quote their quote of Justice O Chinnappa Reddy from that
"One of the results of the superior, elitist approach is that the question of reservation is invariably viewed as the conflict between the meritarian principle and the compensatory principle. No, it is not so. The real conflict is between the class of people, who have never been in or who have already moved out of the desert of poverty, illiteracy and backwardness and are entrenched in the oasis of convenient living and those who are still in the desert and want to reach the oasis. There is not enough fruit in the garden and so those who are in, want to keep out those who are out. The disastrous consequences of the so-called meritarian principle to the vast majority of the under-nourished, poverty-stricken, barely literate and vulnerable people of our country are too obvious to be stated. And, what is merit? There is no merit in a system which brings about such consequences…"
In effect, health inequity (which in my mind is just a window into social inequity) is a huge drag down on the society as a whole and affects everyone - including the researcher in indirect ways. The "angst" is just another expression of the optimism towards a better future where all the world's citizens can live happily and together figure out higher purposes of human existence.
Very beautiful indeed! Thanks for sharing this
DeleteI'm sorry I didn't understand your first question. Regarding the second question which often I've asked and have come to this conclusion currently-
ReplyDeleteI've heard from several people and thus have this conclusion that people who have experienced certain adversities (however small or big) or are sensitised to it in life (more so in young age) tend to be drawn towards questioning and driven to work towards inequity. It probably could be liberating to oneself as well. Since we can't deny that there is both inner angst and outer angst, there's often a mix and at the end probably it doesn't even matter.
Very well put Akshay and Swathi. Thanks for sharing what Justice Chinnappa Reddy has written. It really could not have been articulated better.
ReplyDeleteTo your last point of whether it matters, I do think it matters. t
It matters for the following reasons:
1) The source and context of one's inner angst influences one's deeper "why does this matter to me?" and this translates itself into how one goes about addressing their inner angst in the outer world.
2) The nature and source of one's inner angst also informs the metaphors we choose to communicate internally and externally. Using the metaphor of the oasis in the desert as above, it informs one's vision of what the oasis looks like and what makes the oasis an oasis and the desert the desert.
3) The world is always going to be a place which will have tremendous diversity of forms, thinking, being, and ideology. Knowing oneself allows one to engage with others different from oneself consciously,constructively, and with the ability to listen deeply and empathize witho anyone caught without getting caught up in one's own identities.