Thursday, December 14, 2017

The Hero's Journey as the Patient's Longitudinal Record in HealthIT

Clinical documents tell stories, but the clinical document is not a book by itself describing the full story of a patient's care.  It is merely a single chapter, or perhaps just one scene in a chapter related to the life of a patient.  Over the course of a single illness, several chapters will be needed to make the book describing the course, or even several sequels covering significant events in a series.  Over the course of a patient's life, many such stories will be told in that milleau, making up the patient's biographical health library.

As an informaticist and informatician I'm interested in how one would classify these relationships and how that would be implemented in practice.

The metaphors that I've already started with provide an operational framework in which we can place a clinical document, and so, organize our patient libraries.  While metaphors are great teaching tools, we must also relate these terms to our own terms of art in Health IT, lest they be misunderstood.  The table below is one such mapping.

bookepisode of care
serieshealth concern
milieudisease process
librarylongitudinal record

* sequel is intentionally left out, but will be addressed in Series below.


A scene occurs within a specific time period, has a setting, involves different people (the patient, healthcare providers, family members, et cetera), and tells the story of an event (service event) occurring in the life of our hero (the patient).  The hero may not even be present in the scene (e.g., as in a lab test) but the scene is still relevant to them.  The scene is represented in a clinical document which describes the setting, the time frame and the cast of characters involved, including their role, describing this service event.  This is a document, and has all the defining characteristics thereof. 


I represent a chapter as an encounter.  A chapter ties together several scenes, in closely related time periods, and these are closely associated with some sort of common progression of the story in time.  Clinically, the encounter has many of these same characteristics.  An encounter can result in several clinical documents (scenes), in which the patient receives multiple services (e.g., a consult, a lab result, a diagnostic test and treatment) described in different documents.


I use book for episode of care because the defining characteristic of a book is that it has a resolution that indicates a significant change in the story being told.  The resolution may in fact be the conclusion of the overall story, but often simply represents a change in focus, for example, from onset to diagnosis, diagnosis to treatment, or from treatment to recovery.


The series represents the overarching story in which our hero is engaged.  It is the hero's journey, through various acts (books).  This journey addresses the crisis introduced in the first book of the series, and brings it to a satisfactory (though not necessarily final) conclusion.  Unlike a book, which may leave you hanging, a series brings you to a place where you can stop for a bit, and the tension has been resolved back to an acceptable (though not necessarily starting) state.  In the patient's life, this seems to be best represented as a health concern ... the crisis around which the series resolves.  Series are organized in time, where each book in the series is a sequel to the prior one.  Essentially, each new book is the story of the sequelae related to the prior one.


Our hero's story may not be over.  Odysseus's concern, the Trojan war as told in the Iliad, has a followup ... getting home afterwards in the Odyssey.  The patient's story doesn't end after treatment ... there's also recovery.  The health concern changes over time, but the milieu remains the largely same, and is related to the disease process over time.  I had originally considered specialty as the mapping for this, but I'm finding that specialty changes as one traverses from diagnosis to treatment and recovery.  In the case of my mother's heart attack, the specialty changed from ED, to cardiology, to rehabilitation of the course of her disease.  The health concern also changed.  But what remained common was the disease and recovery process.


All of these are components of the library that tells us the life story of our hero.  This is the one thing in common throughout this lifelong journey.  This is the patient's "longitudinal record."

Having provided the metaphor, I will shortly show how we can put this into practice in an XDS Registry or FHIR DocumentReference metadata describing our hero's journey.



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