In March 2017, we presented 12 Principles gleaned from the work of the many innovators within the Creating Health Collaborative. We founded the Collaborative in the belief that at the heart of our struggle to meet the growing demand for care is our inability to define health as more than just ‘the absence of disease’. The innovators within the Collaborative were trying to understand how communities define ‘health’, and to create those versions of it.

The innovators found that communities’ definitions of health included things like financial security, safety, nourishing relationships, and being able to do what matters to them. The health sector conceptualizes these things as the ‘social determinants of health’. Yet research has made clear that risk factors alone – whether personal, environmental or social – cannot fully explain why people are healthy or sick. The missing link is whether people have a sense of control over their lives.

This insight helped us to make sense of the 12 Principles. They describe an inclusive, participatory and responsive process that has the potential to foster something core to having a sense of control: agency – the ability to make purposeful choices.

This year’s report brings together what we have done and learned since our 2017 report, specifically:

• Hosting our first national symposium, Community Agency & Health
• Creating a tool to help put the 12 Principles into practice
• Recruiting pilot sites to apply the principles to their community health practice
• Delivering our message, principally to the health sector
• And engaging health philanthropy

We have learned that the importance of agency to health is well-appreciated within the community sector and public health, but health care lags far behind. There’s something unsurprising about this. As an industry, it has been successful in deploying technical solutions for acute illnesses and trauma – in effect, removing disease from people’s lives. But as illnesses have become chronic, disease has become something to be managed as part of living. And by becoming something to be managed, it becomes just one of the many priorities in people’s lives. This shift, from removing to managing, from absolute priority to relative priority, is something that health care is struggling with.

Health care needs to look beyond what has made it successful and reconceive its role as supporting people and communities to define and shape their own health. We have come to realize that the 12 Principles provide health care with a framework for that change.

In trying to catalyze that change, we have come up against two of the core challenges that we identified at the end of our March 2017 report. Firstly, while the need for change is arguably greatest in under-served communities, those communities are also most in need of the current approach to health. And secondly, if health care can be convinced to change, how can it redirect some of today’s resources to exploring a new way of working, especially in the absence of the kind of proof that the sector usually looks for?

The answer to the first is brave leaders who see those two things as complementary rather than in competition. We have seen examples of it this past 12 months that give us hope.

The answer to the second has three parts. One, apply the 12 Principles to where the health sector is already required to invest in community engagement to help make that engagement more meaningful and effective. Two, find third party money, likely local philanthropy. And three, describe the value we can bring in terms of building capacity within health care to reconceive its role, with improved bio-medical health outcomes or reduced health care expenditures as only part of the rationale.

In light of what we have learned, we see our mission as enhancing the health sector’s ability to work with communities in an inclusive, participatory, and responsive manner. We’ll be looking for those in the sector who are bravely willing to adopt the 12 Principles as a framework to reconceive their role in the lives of the communities they serve.

What we’ve not learned is how to sustain ourselves financially. Over the next few months, we’ll be exploring our options. The survival of our organization, however, is unimportant compared to changing health care’s approach to health. If you’re in the sector and have not yet started, start. If you’ve started, keep going.

And if we can help, get in touch.