Exciting progress has been made in transforming the physician / patient relationship into a more dynamic, collaborative partnership. Learning Health Systems extend this relationship to include families, caregivers, community members, and researchers working together to advance treatment and health outcomes. This article presents a model to organize and frame Learning Health initiatives. The model is disease independent and builds upon previously discussed practical tips for organizing patient health-education materials (see “Disease Information: Making It Relevant To Patients”). Receive this model charitably as an initial attempt, primarily aimed at providing a big-picture outline of the components. A series of more descriptive articles are planned drawing from collaborative work with the group at the Epilepsy Leaning Health System (see here).
A number of disease and, more broadly, well-being models exist (e.g., here, here, and here), many with considerable convergence around conceptual domains (e.g., sleep, diet, independent living, etc.). The examples discussed here are primarily derived from the Epilepsy Foundation Wellness Institute model (see here). However, the purpose of this article is not to examine the merits of various models or provide a selection rationale for use of a specific model. Instead, there are three aims:
Remove the glasses through which disease and well-being models are viewed to reveal the tint of the lens.
Open up health models to new components to better guide and evaluate the work of Learning Health Systems.
Describe a growing consensus of ideas about ‘Ways of Knowing’.
Incorporating these aims into a discussion about health models may have some novelty, but all of what is presented pieces together work from others. Links and references are provided for those seeking additional detail.
A Shadowy Hue
Personal limitations often lurk behind “insights”, and, ironically, the most disruptive insights challenge what’s known best. That is, knowledge expertise can decrease receptivity to novel concepts precisely due to what an individual ‘already knows to be true’ (i.e., assimilation driven knowledge acquisition), and when an insight does occur, there is a greater disruptive cascade of interconnected knowledge to adjust (i.e., accommodation).
With many of my personal limitations in tow, lifting the glasses through which health and well-being models are viewed reveals a shadowy, scientific tint (e.g., see John Vervaeke video series here). That is, science as an ontology does not speak to meaning or the transcendent, and instead focuses on ever more precise shadow measurements of Plato’s cave. To better appreciate this statement, consider the answers to an iterative sequence of ‘Why?’ questions.
Why are there learning health systems?
To improve the health of patients.
Why improve the health of patients?
To improve the longevity of individuals and their relationships with others.
Why (insert previous answer here)?……etc.
This line of questioning traditionally ends with an ontological claim, ‘in the name of science.’ However, science doesn’t provide a meaning to these activities. That is, using physics or biology or some other scientific entity, answer the question of meaning about learning health systems. Instead, the meaning is presupposed by science. The entire arch of humanities underlies what is assumed by science regarding truth, beauty and the good and it is this amalgam of assumptions that guides and directs efforts.
To be clear, science plays a critical and vital role in advancing the understanding and treatment of disease, but it too tightly constrains health models and thereby risks misguiding learning health initiatives. The primary constraint is a limitation in scope.
The proposed model below (see image) incorporates additional components not found in traditional models (e.g., Transcendence, embedded individual). The new component about how the individual is conceptualized within the model also requires an extension to the traditional ‘Ways of Knowing’ that have guided learning health systems and are listed for reference.
The model includes both bottom-up (i.e., emergent) and top-down (i.e., immanent) processes that completely comingle and inter-penetrate. At the top are the divine, transcendent principles of the ideal, purity, spirit and the good. The transcendent provides the aim for all health-related efforts, and its ungraspable nature is the epistemic slap of ancient Babylonian ruler ceremonies (e.g., see here) that imposes a humility on all those involved. In other words, everyone acknowledges the possibility of being wrong and submits ideas to the public forum of free speech debate. As Jonathan Rauch puts it in the book “Kindly Inquisitors” (see here; example video summary here), there is no final say and there is no special authority needed to assert an idea.
Stabilize and Expand
The bottom-up components emerge from within a social system and are driven by two complimentary processes, stabilization and expansion. The interplay between these two processes is present at every level, and is best characterized by the defining and altering of boundaries that bind biological, psychological, sociological, ecological domains (Bio-Pscyho-Soc-Eco). Using more common vernacular, there is an ever-present play between processes of Unity / Exclusion / Inequity [UEI] (i.e., stabilization) and Diversity / Inclusion / Equity [DIE] (expansion) when defining disease states and their impact. The dual nature of these processes highlights a cautionary note about leaning exclusively on one principle or the other (e.g., lecture here and here). As Alfred North Whitehead puts it, "...there are no whole truths: all truths are half-truths. It is trying to treat them as whole truths that plays to the devil."
Many of the remaining model components, with one exception, are more traditional and well established. The specific components have been discussed elsewhere (see the Epilepsy Foundation Wellness Institute model here and “Disease Information: Making It Relevant To Patients”) and are listed here in name only:
Social determinants of health
Individual, family, community, etc.
Education and Work
Depth cues were added to the model to highlight how the individual is a part of multiple overlapping social networks (e.g., family, community, state), and is embedded and embodied in the world. The last two characteristics are often less familiar within health-related circles and missing in traditional models (see video here for introduction to this area). Embeddedness relates to how the individual is fully a part of and in relationship to the world. The graspable nature of a pen is neither a part of the ‘outside’ world or intrinsic to the individual. It’s in the relationship. Embodied refers to how one’s physical being forms the nature of the relationship to the world (e.g., James Gibson's work on affordances, see book “The perception of the visual world”; one of his lectures – part 1 and part 2). For example, the graspable nature of a pen is outside the experience of a fly.
Learning Health Systems
Wiping away the scientific tint to Learning Health Systems has a two-fold impact. First, the transcendent is the meaning supporting Learning Health activities and all aims become teleological in nature, directed toward an unknowable / unobtainable ideal or good.
Second, there is a fundamental change in how 'knowing' is conceptualized. Science emphasizes a Cartesian, Representational model of knowing. That is, one comes to learn and understand truths through a method, primarily by learning a set of propositions.
In contrast, the pre-Socratic, Transformative model extends this definition by incorporating the embedded and embodied nature of the individual. One comes to understand truths and insights through a transformative process that changes the thoughts and actions of the individual and their interactions with the world, and the way to world manifests to the individual. The Transformative model incorporates four types of Knowing:
Knowing what or about things that can be judged as true or false, semantic memory, facts, orthodoxy, etc.
Knowing how to do something, sets of skills, knowledge that is judged on whether it works and on whether true or false, orthopraxy, etc.
Knowing what is relevant and giving it appropriate attention (e.g., what to foreground, background, ignore in your attention), situational awareness, what are the appropriate affordances, episodic memory, etc.
Knowing how mind/body are embedded in the world and how the individual is shaped by the world and world is shaped by the individual, what set of affordances are available given one’s embodied nature, etc.
All four types of knowing are appropriate targets for Learning Health Systems. As a practical example, seizure-related first aid courses may incorporate propositional knowledge (e.g., types of seizures), procedural knowledge (e.g., what to do for someone experiencing a seizure), perspectival knowledge (e.g., being attentive to seizure recognition in various settings) and participatory knowledge (e.g., understanding strengths and weakness of one's self, other's and the surroundings when interacting with someone experiencing a seizure.). There is strong convergent evidence supporting these ways of knowing. For instance, different neuroanatomical structures are engaged in operations involving knowing 'what' versus knowing 'how' (e.g., Broca's vs. Wernicke's area, example lecture here). Forthcoming articles will explore additional details of the model and examine implementation efforts.