I hold a leadership position in an academic medical center and, although my practice is almost exclusively outpatient based, I am heavily involved in various activities which focus on inpatient quality metrics. There is a stark contrast between the stakes involved with hospitalized patients and the stakes involved with those followed in the ambulatory setting. Patients in the hospital are generally in settings with a high risk of death, either because of underlying disease, planned interventions, or both. Not only are the stakes high in terms of ultimate outcomes, but they tend to be high financial stakes as well. Deservedly, much emphasis is placed on this environment.
To a great extent impact into daily quality of life falls within the realm of how medicine impacts people in the mundane world of outpatients. This is where people spend the overwhelming majority of their lives. One of the great limitations we face is a huge information deficit in this realm. Even the most closely observed outpatient may interface with their physician or extender a few minutes every week and more likely every few months. Our end points as providers are measured after weeks, months, or years and even our most stellar successes are punctuated by constant suffering while we wait for our end points.
Virtually none of my training has made me particularly aware of the challenges my patients face in dealing with their chronic diseases, every day. In addition there are few financial rewards (actually no financial rewards) for devoting time to expanding our awareness of such issues. Even if we become aware, we have little additional insight relating to novel coping mechanisms which allow patients to deal with disease morbidity, It is not part of our training, nor is it a research focus. We are simply not particularly aware and there are few initiatives to look for the gaps.
Beyond saving lives, what is our mission? It is my opinion that our goals as physicians are seriously misaligned with the goals of our patients. We are focused on what we believe they need and are dismissive of the possibility that we should be focused on what patients want. In order to accomplish this end we need to start by determining how disease impacts patients and their families in their daily lives. Perhaps the impact may not rise to the level of life and death but it is terribly important nonetheless.
We need to become serious about asking these questions, developing tools to assess impact, and then look at these as legitimate endpoints for looking at the efficacy of interventions. We need to realize that the so called hard objective endpoints may simply be surrogate endpoints which may or may not track with what patients value more.