If we are to move from our current provider-centered system toward a more patient-centered system of healthcare, we must understand the obstacles. The Institute of Medicine defines patient-centered care as “providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.” How can we be sure that we understand what is important to patients, and by what standards they judge the goodness of the care we provide? And how do we handle the divergence between patient and provider judgments of good care?
My team at Vanderbilt recently completed a PCORI-funded study of patient and provider perceptions of healthcare experiences. We interviewed 284 patients and their families, and the clinicians who cared for them, to capture non-routine events (or NREs), which are defined as any event that deviates from optimal or expected care for a specific patient in a specific clinical situation. We evaluated whether patient or family reported NREs occurred in the course of care during four types of acute clinical encounters–adult ambulatory surgery, pediatric cardiac surgery, pediatric outpatient chemotherapy, and adults with acute coronary syndrome undergoing cardiac catheterization.
What we learned was surprising: There was a huge disconnect between patient/family- and clinician-reported events. Very few of the 422 patient/family reported NREs were also reported by their clinicians, who reported 842 NREs of their own. In fact, a substantial number of NREs deemed important to care and safety by patients and their families were unknown to the clinicians caring for them.
One example: An elderly male patient came in for routine outpatient surgery, during which he had an unexpected cardiac arrest. After being resuscitated, he was admitted to the ICU overnight for close monitoring. The operating room clinicians all reported the cardiac arrest as an NRE. The patient-reported NREs were: 1) “Something was wrong with my heart during the surgery, and I wasn’t able to go home right afterwards”; 2) “The door to my room was squeaky and the noise kept me up much of the night.” Notably, he rated the severity of the second NRE higher than the first.
The focus of patients and families was on their personal experience as they encounter the healthcare system: their individual needs, preferences, and expectations. In contrast, clinicians focus on their work experience, framed by their own and the teams’ myriad competing priorities and needs. While both groups’ NRE reports emphasize deficiencies of communication and of process, they really highlight two different world views of our systems of care.
Each stakeholder in this complex system has a different agenda with its own set of imperatives, priorities, and preferences. Does this mean that patient-centered care is doomed to failure? I hope not, since it is the right thing to do for individual patients and for society as a whole. But as this study reveals, we must first focus on the delivery of care that patients and families actually want and need. Then, we must all work together to consistently deliver safe and effective personal health experiences–at a lower overall cost than we do today. More on the how in a future blog.
Matthew B. Weinger, MD, is professor of anesthesiology, biomedical informatics, and medical education at the Center for Research and Innovation in Systems Safety (CRISS) with Vanderbilt University Medical Center in Nashville, TN. He is a staff physician, GRECC, with the VA Tennessee Valley Healthcare System. And he serves as vice chair of medical research with the AAMI Board of Directors.