It'S My Heart Why Not My Data?

I am a cardiologist. I am also a patient with a potentially life-threatening heart condition. Like millions of other patients, I cannot see the information about my own heart that is being recorded by a cardiac implantable electronic device. The reason I can’t is not based on any technical limitation. It is the result of a choice by the device’s manufacturer to reveal clinical data only to doctors, not to patients. That arrangement is typical, and it is also inappropriate, anachronistic, and dangerous.In my own practice, I have learned the value of engaging patients in their own care. That comes in part from the humbling nature of clinical experience, in which some good outcomes have come from patients ignoring my advice, and some bad outcomes have followed their taking it, and with the recognition that I (and medicine in general) do not have all the answers to patients’ questions. Maturing as a clinician means I recognize that there are few absolutely right or wrong care plans, and that patient preferences, informed by the best medical information available, ought to shape clinical decision making.My journey as a patient started in 2008, when I learned that I have a relatively unusual variant of hypertrophic cardiomyopathy. Although I am asymptomatic, a recent article1 challenged my sense of well-being. It reported that a cohort of patients with findings similar to mine had a prognosis worse than previously appreciated, with a relatively high risk of arrhythmic sudden cardiac death. …