JMIR Publications

ABSTRACT

The COVID pandemic has shined a harsh light on a critical deficiency in our system of health care delivery – our inability to access important information about patients’ values, goals and preferences in the Electronic Health Record (EHR). At Memorial Sloan Kettering Cancer Center (MSK), we have integrated and systematized health-related values discussions led by oncology nurses for newly-diagnosed cancer patients as part of routine comprehensive cancer care. In this model, communication encompasses not only the patient’s wishes for care at the end of life, but also more basic and holistic personal values including sources of strength, concerns, hopes, definition of acceptable quality of life, and what the patient wants the clinical team to know about the patient as a person in order to provide the best care. In addition, health care providers use a structured template to document their discussions of patient goals of care, which may address the expected course of the patient’s illness, intent of the current treatment, goals identified by the patient, preferences for end-of-life care, and, if relevant, hospice enrollment. To provide ready access to these crucial communications between clinicians and patients as well as key information about the patient as a person, with individual values, goals and preferences, we undertook creation of a “Patient Values Tab” (“Tab”) in our center’s EHR to display this information in a single, central location. Our institution’s EHR platform is Allscripts Sunrise Clinical Manager, which organizes data displays into “Tabs,” as do many other EHR platforms. Here, we describe the interprofessional, interdisciplinary, iterative process and user-centered design methodology that we applied to build this novel functionality, as well as our experience with the initial implementation of this new feature and our plans for the Tab’s ongoing refinement and evaluation through subsequent iterations. It is our challenge and obligation to enrich the EHR with information about the patient as a person, which is rarely included or readily accessible. Patient-centered care is highly prioritized by the Institute of Medicine, by patients and families, and by their professional caregivers. But it can only be delivered if the patient’s personal values are as prominent as the laboratory values in the EHR on which we all rely and spend the bulk of our time. Although it can be burdensome and distracting for clinical care, the EHR has tremendous untapped potential to support patient-centered care. Realization of this capability is a pressing public health need, requiring the full collaboration of technological experts with a broad range of clinical leaders, users, patients and families to achieve solutions that are both principled and practical. Our new Patient Values Tab represents a step forward in this important direction.