The major focus was one developing tools and approaches to define the scope of the problem which likely huge but difficult to define and quantify. It was a fascinating group of people which included physicians from a host of specialties. However, it was not limited to physicians and I would venture to guess that nearly half (and perhaps more than half) of the attendees were non-physicians, including many patients.
Even that characterization is not entirely accurate since every one of the attendees are currently recipients of some form of medical care, some more intensively than others. This is of note in that all inquiries into the sources diagnostic error and approaches to addressing diagnostic error interested with the patient communities. Their stories of harm were compelling and at times overwhelming. Their stories were not an add-on to the meeting but in fact central to it.
I was struck by the gulf that still separates patients from physicians and the health care delivery system, a gulf that is maintained by perceptions, processes, and desires to maintain power. However, as I heard the stories of patients, many of whom were very smart and sophisticated, I realized that the elements which maintain the separateness are the same elements which are a source of diagnostic error in the first place.
My perspective as a physician is shaped by the perceptions of those I trained with and those I work with. We view patient histories with great skepticism. What we hear from patients may not be accurate, relevant, or complete. That may be because they do not give us complete stories, not surprising since we demand they provide them under the most time constrained conditions where they suffer from significant performance anxiety. It may also because we fail to hear what they are trying to say and fail to give them sufficient time to reflect upon what the feedback we give them.
My residents often complain that I am able to elicit a history different from what they obtain. I found this very curious until I had a realization as to why this happens. Resident interviews act as a facilitator for patients to reflect upon what we as physicians want to know. Patients come into visits as poorly prepared as we do an questions offered by the residents surprise them. Answers obtained under those circumstances are often incomplete or wrong. However, in the time supplied after the resident leaves and I arrive, patients reflect and rethink their answers, having time to get their stories straight. No guile involved; just the opportunity for reflection improves the quality of the information delivered.
There were lots of interesting aspects of the conference and many interesting speakers. However, one specific session made a particular impression. It was very focused on the role of patients in addressing diagnostic error. The roles proposed proposed for patients raised in my mind the thought that addressing the problem of diagnostic error will require a fundamental change in how we view the role of patients in the diagnostic process. In each of the patient stories of missed diagnosis the opportunities for improvement and avoidance of similar events appeared to require an engaged and activated patient providing a feedback loop to the health care provider to avoid diagnostic pitfalls.
Once the patient is viewed as part of the diagnostic team, it creates the need to define boundaries and ownership. It was absolutely fascinating to hear the divergence of opinions between the physician and patient communities on where these boundaries should be and there was great concern that the unintended consequences of unfiltered information sharing could be dire. However, it was also pointed out that we survived having family access to delivery rooms and ICUs and that patient and family involvement has turned out to be an enhancement, not a detriment to healthcare delivery.
There is no question in my mind that the old model of care delivery has a short half-life. Patients want and deserve better .However, one particular attendee who was a primary care MD spoke up. He was a bit annoyed the primary care physicians were often pilloried as central characters in stories of harm. He urged patients to ask why their primary care physicians cut them short, ignored their complaints, and appeared to be unsympathetic. Providing thoughtful and reflective care using shared decision making takes time and effort. That fall squarely in the uncompensated or poorly compensated quadrant of physician efforts.
Most of the stories of harm and missed diagnosis could be linked back to insufficient time to hear or assimilate information from patients and to integrate all of the pieces. Circumstances and models where this does not happen now generally involve heroic efforts of extraordinary people and non-scalable or sustainable models of care. Patients may want and deserve better, but patient leaders need to understand they are dealing with an economic problem. The current administrative pricing structure in health care values physician activities required for reflective and shared care at essentially nothing. The price signals linked to these activities are telling doctors that there is no value in these activities and against this relentless tide of pressure, no one but the most heroic of physicians continues to resist.
Economic laws are almost as immutable as the law of gravity. It takes much energy to keep things from falling. Items valued as nothing tend to disappear over time. It is not surprising we have found ourselves with a scarcity of reflection and time spent with those who patients believe should be their advocates and counselors. Our own moral compasses as physicians tell us when we have time to reflect that we should provide this time to patients, whether we are paid to do so or not. However, that is simply unrealistic. As things stand now, we are the engines that support not only ourselves but entire teams of people who are almost completely dependent upon the revenue generating capacity of physicians. Thus, we make compromises and rationalize these decisions on the basis that overall we do overwhelmingly more good than harm and it is important to keep the lights on and the doors open. We do our own little bits of God's work and recognize that we cannot fix all of the world's ills.
The payment system that fails to incentivize physicians to deliver what is needed to address diagnostic error continues and, for the most part, few recognize that the scarcity has been created by the dysfunctional administrative pricing system. While patient engagement is an essential piece to address diagnostic error, it is necessary but not sufficient. Patient engagement creates activated patients. However, this is of limited utility without activated clinicians. Some clinicians will become activated because of their moral compass but for the broader provider audience, activation will require financial rewards or at least the lack of financial deterrents. The sooner the activated patients realize this, the better off they will be.