A recent NY times article, The Tangle of Coordinated Health Care presents the complexity of managing patients with chronic and complex care needs. Although typically considered an unmet need in elderly populations the responsibility for continuity of care falls on each of us individually when we meet the firewall of healthcare data silos that lack a coordinated interphase. Incompatibility of data systems complicates the efficient exchange of informatics. Are we putting too much of a burden on the patient for oversight of their care?
Patients managing multi-morbidity or chronic specialized care frequently access their healthcare from different providers in a variety of health settings. Unfortunately these systems of care aren't necessarily communicating updates or outcomes of the full cycle of care outside of their walls. Moving forward, reimbursement and value determination will rely on medical outputs to provide qualitative and quantitative insights beyond the fading "fee-for-service model. Where are the input channels or nodes for data corresponding to the entire arc of treatment and patient management?
More specifically, who coordinates the proliferating number of health care helpers variously known as case managers, care managers, care coordinators, patient navigators or facilitators, health coaches or even — here’s a new one — “pathfinders”?
Clearly the US healthcare system remains fragmented. Specialists work in silos and lack prescription history or even real-time updates of ongoing care in the context of episodic disease management. I am reminded of the three stooges in their Who is on First skit.
In the absence of significant health informatics reform, the patient is the conduit for relaying information--in my opinion that is truly a heavy burden. Especially if you consider that the radio silence between stakeholders often stems from the paywall or monetization of data access.
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In a world of "evidence-based" medicine I am a bigger fan of practice-based evidence.
Remember the quote by Upton Sinclair...
“It is difficult to get a man to understand something, when his salary depends upon his not understanding it!”