If I’m helping to lead the patient experience from the top down, Dave deBronkart is leading it from the bottom up. DeBronkart is a cancer survivor diagnosed with Stage IV renal cell carcinoma in 2007. The disease had metastasized to his lungs and bone, and he was given a median survival time of just 24 weeks. He has an amazing story.1 Seven years later, deBronkart has gone from patient to crusader, working to drive patient empowerment across the world. DeBronkart believes in patients taking more control of their healthcare and advocates a shift in the balance of power from providers to patients. DeBronkart uses the nickname e-Patient Dave, with the e standing for “empowered, equipped, educated, engaged, and expert,” characteristics he believes critical for patients to be successful partners in their healthcare journeys.
I first met deBronkart at the TEDMED 2012 event in Washington, D.C., when he and I participated in a joint interview, “What Makes a Doctor-Patient Partnership Flourish?”2 We were both asked, “Who’s really responsible for your healthcare? Is it you, the patient, or the doctor?” DeBronkart observed, “The vast majority of what people do to take care of themselves and their families is themselves, but I run out of skills and information sometimes, and I go to my doctor, so it really is a partnership.” I agreed, stating that the responsibility for successful patient care belongs to both doctors and patients.
Only when this partnership is strong can we ensure that providers deliver safe, high-quality care in an environment where patient expectations are fulfilled and patients are satisfied. Patients need to become more involved, ask more questions, and understand what to expect. Patients need to become their own advocates, and if they are incapable or unwilling, family members or friends must step in to help.
To some patient advocates, this idea is controversial; to others, it’s downright repugnant. They will argue that caregivers have a responsibility to provide knowledge, protection, communication, and education to patients because they simply are not prepared to be equal participants. I don’t completely disagree; the job of healthcare workers, especially doctors and nurses, is to be advocates for their patients, and we are all educators and caregivers. Yet while patients have a distinct disadvantage when it comes to healthcare knowledge, no one knows an individual’s history or body better than the patient.
But healthcare delivery customarily has been quite unidirectional, an environment in which it is difficult for patients or families to function as successful advocates. Throughout history, physicians were healers, most likely elders, with almost mystical status. Doctors occupied an exalted, even royal, social position and possessed knowledge that was neither questioned nor challenged. Furthermore, hospitals are intimidating and unfamiliar places. Patients are anxious, worried, and, in some cases, terrified about their condition and whether they will survive. They fall into a pervasive submissiveness and become afraid that ...