WHERE THE BRIGHTEST MINDS in health and IT meet.
February 19-23, 2017
Two Sisters: One thriving with cancer, the other, a HealthIT consultant & social worker, join forces to document and explore a patient's relationship to her health data. They will explore a narrative that reaches across care in at least three states and a multitude of settings, from stage 4 to no evidence of disease. This journey has included precision medicine, social security forms, a clinical trial and a tote bag full of MRIs, CT scans and legal paperwork. As a patient with a chronic condition, health data becomes central to life--an additional part-time job to manage who needs what information, and when and how. Exploring the patient narrative is the first step in developing an understanding of what data points are critical for patients to have, maintain and manage. We will discuss how using the patient narrative to explore gaps in health data interoperability can provide critical insight into information that may not be evident from within the healthcare organization.