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. In part 3, I shared how I learned that the 12 Principles are about control – a way to foster it amongst communities and enable health care to share it.
To my mind, describing the Principles was only ever a start. Although putting them together has been a lot of hard work, a list is just a list. What matters is for the list to be applied in the real world, for that process to be described and shared, and for the list to evolve, both in terms of what’s in it but also in terms of what else is needed to apply it to practice. And, of course, it’s important to work out how to decide whether applying the list is making a difference.
We went about this by making the list a product – specifically our application tool (see PDF) – and then trying to work out into which market the product might play. My interest has always been to get health care to change and so, looking at the discussions emanating from the sector, the opportunity seemed – and still seems – to be around the idea of community engagement.
Community Engagement
As health care is increasingly accepting that it contributes no more than 25% to our health, and as it is being incentivized to think about social circumstances and how they impact outcomes, the sector is increasingly thinking about ‘engaging’ the communities it serves. The problem is that it is doing this on its terms – such as engaging the community on things that matter to its bottom line like readmissions after discharge – rather than as a way to establish shared terms.
“Truly addressing the social determinants of health is simply not possible without communities at the table”
This myopia is another example of the control that I described in part 3 of this series, a control that, although largely well-meaning, is ultimately detrimental to people’s health. In fact, if one looks at the increasing rhetoric and work informed by the ‘social determinants of health’, it’s hard not to notice how people in multiple systems – health, housing, food, transport, etc – are really just aggregating their control over communities, without ever really engaging them.
Engaging communities exposes you to uncomfortable truths. One of those truths is that trying to ‘correct’ a social risk factor, such as poor housing, although likely beneficial in the short term, fails to address how those social circumstances came about. More often than not, it’s because communities have been exploited or ignored, something that is all the more likely when they’re prevented from having a voice. Truly addressing the social determinants of health is simply not possible without communities at the table.
So, in March 2018, we decided to position the 12 Principles as a way to bring deeper purpose to community engagement. We did this through our 2018 report (see PDF) and an updated version of our application tool (see PDF).
The Perils of Being A Non-Profit
Having made the decision to engage health care around the need for deeper community engagement, we then needed an entity to deliver the work. Given that applying the Principles would effectively be a form of real-world experimentation, we reasoned that we needed a vehicle that could receive grants, whether from philanthropy or government. That meant a non-profit.
“Most grant giving bodies refused to consider whether their ways of working were part of the problem; I find that deeply anti-scientific and socially irresponsible ”
The challenge, however, is that very few grant-giving bodies are willing to look at health beyond a bio-medical frame. Notions of control being important to health are a little ‘out there’ for most of them. Indeed, we found many such bodies not only didn’t understand the importance of agency and control to health but also refused to consider whether their ways of working were part of the problem. If there is one function with huge amounts of control it’s grant-giving and yet we’ve been surprised by the lack of self-awareness amongst its leaders, a situation that I find deeply anti-scientific and socially irresponsible.
I’ve also learned that non-profits require an extraordinary amount of paper work. My career to date has been in the commercial sector. Compared to non-profits, its operations are simple; you provide value and get paid for it. In the non-profit world, there are the added requirements of proving that what you’re doing is for a good cause and that how you’re doing it is not simply a way to side-step tax obligations. These requirements are right and appropriate but for a small non-profit the result is effectively a barrier of process between you and the good cause.
A fundamental tenet of creating change in the real world is the need to test multiple approaches and respond quickly to what you’re seeing. In essence, be nimble. In my experience, a non-profit structure can inhibit this, especially when the operation is small. Success becomes about managing process and paper work, not finding new ways to contribute to the cause. This, combined with our experience of engaging funders, has told me that a non-profit may not be the right fit.
Market Response
The above myopia withstanding, we did find a number of health care organizations interested in considering agency in their community health strategies. However, over and over, we hit two barriers (or a combination of them).
“There is an uncomfortable paradox… I am making a living by packaging and selling the misery of being exploited and ignored”
The first was that the interest was coming from middle management, rather than leadership. Although it was encouraging that those working in community health saw the importance of agency and control, and wanted to explore how the Principles and the tool might help them, all too often they did not have any meaningful influence over strategy.
The second was that often these organizations had little capacity to add new approaches to existing work. The 12 Principles don’t ask you to add anything new to what you’re doing, they simply ask you to change how you’re doing it. However, that change requires capacity and all too often we found that health care is full-steam-ahead doing rather than thinking about how to do.
On Finding an Audience
While doing all of the above we got unexpected traction in speaking at events for health care leaders. What’s become clear is that some leaders understand that a radical shift is needed but they need time and space to think about it. The industry creates this through gatherings, often away from the day-job. In speaking at these events, I’ve been pleasantly surprised by how willing some leaders have been to talk openly about the failings of their current approach to health and the need for a radical reframing.
There is an uncomfortable paradox in these speaking engagements, however. The knowledge that I share from the stage is what I have gleaned from practitioners doing the real work, often in difficult social environments and for little remuneration. That’s not to say that there isn’t any value in being a messenger or that those practitioners would even want to be on stage but there is a chance that my speaking is yet another example of an extractive force working on communities. In effect, I am making a living by packaging and selling the misery of being exploited and ignored.
With this discomfort resolutely in place, in the final part of this five-part series I’ll share what Bridging Health & Community will do next in an attempt to bring about change in the real world.
Aggregrating control over communities instead of actually engaging is spot on I feel this happening. It’s well meaning but it’s continuous because the wrong model is used from the beginning i.e "top down" "show them" type of model, rather than asking, listening, equal value of sharing knowledge or lived experience. I have attended alot of public health venues in the past where it’s just about a list of names being gathered as evidence of engagement. I have witnessed "out reach" groups just swapping lists of names among themselves for them it’s just about numbers because it’s always measured in the short term.