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Wednesday, April 19, 2017

Separate but Equal Isn't

Every now and then (actually, more frequently than that), two topics from different places somehow collide in my brain to produce synthesis.  This post is a result of that:

I've been paying a lot of attention lately to care planning.  It's been a significant part of the work that I've been involved in through standards development over the last decade, and it comes to special focus for me right now as I work on implementation.

In another venue, the topic of data provenance came up, and the concern that providers have about patient sourced data.  Many of the challenges that providers have is that the patient concerns don't necessarily use the "right terms" for clinical conditions, or that patients "don't understand the science" behind their problems, or that the data is somehow less exact.  My Father's use of the term "mini-stroke" so annoyed one of his providers (a neurologist who reported to him: "there is no such thing"), that it likely resulted in his failing to get appropriate care for what was probably transient ischemia, resulting in an actual stroke, which eventually lead to his ultimate demise through a convoluted course of care.

This concern about veracity or provenance of patient data leads to designs which separate patient health concerns and information from provider generated data.  Yet those same concerns initiate the evaluation process starting first with the patient's subjective experience, gathering of objective evidence through skilled examination, knowledgeable assessment of those details, leading to cooperative and effective planning.

The care planning work that I've been involved in over the past decade originated in early work on patient centered medical homes driven by physician groups, incorporated work from several different nursing communities in HITSP, HL7 and IHE, and eventually resulted in a patient plan of care design, which was subsequently evolved into work implemented in both the HL7 CCDA and FHIR specifications.

The patient's plan of care should NOT originate from a separate but equal collection of data, but rather, from an integrated, patient included approach, that does not treat the patient subjective experience as being any less valuable to the process.  Both FHIR and CCDA recognize that in their designs.  After all, if the patient didn't have any complaints, physicians wouldn't have any customers.

It's past time we integrate patients into the care process with their physicians, and keeping their data "separate" isn't the right way to go.  If my provider want's to be my medical home, he needs to remember, it's my home, not his, and we, as implementers, need to help with that.

   -- Keith



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