In part 1 of this five-part series, I explained how health care uses three inter-relating biases to control the dialog in health. In part 2, I described how I went to find a new dialog only to discover that many practitioners already understand the importance of things like trust, reciprocity and cooperation as a pathway to improve lives, including health. Along the way I was able to describe 12 principles to their work but I wanted to understand why they were the things that surfaced.
Despite the people-centric nature of my rhetoric, I’m just another outsider peering into communities and interpreting what I see through my own frames of reference. As a doctor my initial attempts to understand the 12 Principles were through the frame of what I understood makes people healthy or sick – risk factors.
Agency, Control and Health
Growing up in a working-class community I have always been clear that some people have aspirations and hope, while others ‘accept their lot’. I’m sure those two broad buckets of people exist in all demographics but in my experience, having ascended to the dizzy heights of middle class, there is a higher proportion of people that ‘accept their lot’ amongst the working classes.
To my mind, this is a big reason why attempts to ‘educate’ people about their health tend to fail lower down the socioeconomic gradient. I’ve heard health professionals suggest that people ‘down there’ are ‘thick’ or ‘stupid’, which is why they make ‘bad decisions’. I think they completely miss the fact that a large group of people are simply resigned to their fate. That’s either because they don’t realize that they can try to change their circumstances or because they have tried and failed.
Of course, if they have failed it’s not always because they lacked the skills – in fact, in my experience, it rarely is. More likely it’s because the odds are stacked against them. For instance, the services available to them may be poor. Alternatively, their economic security may be so fragile that they dare not risk what they have. Or, quite simply, they maybe being hindered by those that seek to oppress them for political or cultural reasons.
Whatever the reason, this phenomenon – of people being resigned to their fate – is well understood by social epidemiologists. These epidemiologists try to make sense of population-level bio-medical data through sociological lenses, such as economics, anthropology and geography. The social epidemiologist that has most influenced my thinking is S. Leonard Syme of the School of Public Health at the University of California in Berkeley. Len believes that lower down the socioeconomic gradient almost half of all health outcomes can be attributed to people lacking a sense of control over their lives.
Yes, you read that right, almost half.
Accepting your lot. Being resigned to fate. Not having control over your life. Whatever description you use – and academia has used many – it’s bad for your health. Perhaps worse than anything else.
The 12 Principles describe a way of working. It’s inclusive, participatory and responsive. So, through my medical frame, I understood the Principles as a mechanism to reduce the risk of something that made people sick. That ‘something’ was a lack of ‘agency’, the ability to make purposeful choices and core to having a sense of control. So, in 2017, we packaged the 12 Principles as a way to foster individual and collective agency so as to improve health.
The Other Gaze
While peering into communities, however, they looked back. And when they shared what they saw it made me understand the Principles in a different light. Yes, they described an inclusive, participatory and responsive process, and, yes, that process has the potential to foster individual and collective agency but they also form a mirror for health care to look in to.
As the burden of disease in high-income countries has shifted from acute conditions, like infections and trauma, to circumstance-related chronic conditions, like high blood pressure and diabetes, health care is having to concern itself with people’s lives, not just their health. In doing this, it’s having to accept that health is just one of their priorities, and often not the main one. The question for health care, then, is how does it serve communities in this new context?
The 12 Principles effectively describe the terms under which communities will engage with health care. The questions for health care, then, is how does it need to change to meet those terms?
Two For The Price Of One
On the face of it, then, the 12 Principles surfaced for two reasons – they described a process to foster individual and collective agency and they provided a mirror to facilitate change in health care. For a while, this two-for-the-price-of-one puzzled me but I now understand them to be related.
By controlling the dialog in health, health care has assumed a significant amount of control over people’s lives. Control is a finite resource and so that assumption has, by definition, has had to be taken from somewhere. That ‘somewhere’ is communities. And so, ironically, health care has, in fact, been worsening people’s health by robbing them of their agency, their sense of control.
That’s not easy reading. And it’s certainly not a conclusion I wanted to come to when I started this work in late 2012. And yet, it seems to be real. Indeed, as I increasingly let it inform my view of the world I see examples of it over and over.
Witness the recent revisions to the guidelines for treating high blood pressure. The bio-medical evidence suggests that we should treat more people, and sooner, an action that will cost a lot of money. But where is the competing evidence on the value of trust, reciprocity and cooperation to a community’s health? Might these three things be more important to overall health than a pill for one condition? There is very little such evidence, partly because those that fund research do so solely through a bio-medical lens through which community-based work is seen as ‘fluffy’ and not worthy of investment. Overall, health care gets to tell communities the answer is a pill, while preventing different views on how to protect health from surfacing. Control.
So, that’s what the 12 Principles are. They’re about control. They’re two sides of the same coin. On one side they describe a process by which agency, a core part of control, can be fostered. And on the other they create a mirror to enable health care to understand how it has assumed control over communities and how it can share that control. In part 4 of this five-part series I’ll share how we took that understanding and tried to make change in the real world.