In the social media and marketing world there is a concept called “brand democratization”, which refers to the notion of having your customers contribute to and partly shape a brand’s identity. Marty Neumeier, who has written extensively on branding, asserts that a brand isn’t what the producers of the product say it is, but rather what the customers say it is.
The notion that the meaning and identity of a brand is outside of the control of those that develop a product is unsettling for many in business. Social media only amplifies this feeling. A social media consultant I work with once relayed a story about how a client (a big company) once asked how they could use social media to control their message more effectively and how unsettled they were to hear that “control” is not what social media is about and frustrated at the thought that they were no longer in the driver’s seat.
To some extent, we are seeing the same thing take place in the health sector, particularly in areas of great complexity. As complex chronic conditions become more prevalent and the number of people with multiple chronic conditions represent a larger proportion of the population (a near inevitability in societies with aging demographics and better health care), complexity will gain a greater place in our health care policy discourse.
Evidence-based medicine holds very clearly a sense of what is good and not-so-good quality content. Hierarchies abound and medical students are taught early on about what the best evidence is and how it is generated. The problem with the “best evidence” in health care is that it typically comes from studies focused within a rather narrow contextual band of activity using designs that aim for simplicity, not complexity. In standard research programs the aim is to reduce variation, not embrace it.
This is nearly the opposite of complex systems, where variation is, to a point, the key to learning and adaptation. Making sense within a complex system requires deep appreciation of context and an understanding of one’s position within the system. However, because such positions are relative, the ability to hold “expertise” in a system is limited. Indeed, there are many who occupy positions where they have great knowledge and the ability to re-interpret and generate evidence as opposed to only a few.
Does this create evidence democratization? When there is so much information from many sources, a need for contextualized feedback and many actors with useful experience and knowledge occupying different positions related to a problem, it seems that the answer is “yes”.
Social media operates within an environment of complexity due to the widescale involvement of diverse actors working in a coordinated, yet sell-organized manner, across many boundaries within multiple overlapping contexts. What is “true” within a social media sphere is only made so by the application of that knowledge within a particular context. A blog only has meaning to its creator and her or his audience, not the entire system. Yet, the actors engaged with that content may take it and rework it, retweet it, or post it in a new environment, where it is transformed into something else. If that “something else” has value, it lives onward.
In health contexts, that value might be very different depending on the condition and the manner in which that knowledge is applied. From a traditional evidence-based health approach, this is utterly terrifying. How can evidence be re-interpreted? What are the harms associated with taking something from one context and applying them to another for which it wasn’t designed? These are concerns, yet it is hard to imagine that there isn’t also some potential value in exploring ways in which this plays out in chronic and complex conditions given that the evidence is rarely that “hard” going in.
Are we on the cusp of a new wave of evidence democratization? And if so, are we going to be healthier as a result of it? More innovative? Or in deep trouble?