This is a real treat – a guest post by SPM member and participatory pioneer Kate Lorig. Kate was a friend of our founder “Doc Tom” Ferguson, is cited twice in his e-patient white paper (see right sidebar), was the author of an important essay What will it take to embrace participatory medicine? One patient’s view in the first issue of our journal, and is listed on its advisory board.
Her bio (at bottom) doesn’t brag about it but in many circles she’s best known as the creator of CDSMP, the Chronic Disease Self-Management Program, a six week training that basically teaches patient engagement – teaches patients to be engaged in managing themselves.
Except now she wants us to maybe not talk about e-patients. See what you think.
My mother taught me that “Sticks and stones may break my bones but words will never hurt me.” She was wrong. Words can and do harm. It is for this reason that “nice” people do not use racial or religious epithets.
This brings us to E-Patient. The origins of this phrase are murky. It may have originated in Tom Ferguson’s 1996 book, Health Online. Tom was a true pioneer in defining a new, central role for patients and suggested the use of the Internet for health care. Ferguson defined e-patient as a medical consumer who is “equipped, empowered and engaged.” (Note there is nothing in this definition about using the Internet.) Today we tend to use the term as someone who is electronically engaged with their health.
The above explains a little about the “e”. Now let’s talk about the patient. The Oxford English Dictionary defines patient as “A person receiving … medical treatment. The second OED definition is a person “… to whom something is done,” (i.e., a passive recipient).
Immediately there is a dilemma. One cannot be enabled, empowered and engaged while being passive. However, the problem is much bigger. I, like most people with several chronic conditions, do not spend my life being a patient. Yes, I am a patient when I am in relation to my medical care, although my providers can attest that I am not passive. However, 99.9 percent of my time, I am not receiving direct care and I am not a patient. I am a person. Being a patient is only one small part of what I do. I am a daughter, professor, gardener, volunteer and friend. By the way, you can put E in front of any of these; in most parts of my life, I am electronically connected and empowered.
I knew Tom Ferguson and wrote for his journal Medical Self-Care. I considered him a friend and mentor. Nevertheless, I wish he had never used the term ‘e-patient.’
Mine is not a lone voice. Many years ago when we first started writing about self-management and designing chronic disease self-management interventions, the people we most wanted to influence made it very clear to us that they were not diabetics, arthritics, or patients. They told us very clearly that they were people with ____. They did not want to be identified as their disease or as a patient (passive by definition). In on-line disease specific discussion groups, I have often seen people discuss their dislike of labeling as a patient or by their disease. We’ve always believed that when you don’t know what to call someone, ask them.
The term ‘e-patient’ has run its course. It does not serve us well. The word patient should be reserved for when we are receiving health care directly, interacting with doctors, nurses, hospitals and clinics. As for the “e-“, let it rest in peace. Instead of labels, patients and providers alike should work toward enhanced communication and understanding. Being a patient is part of life. But it is not our total identity nor is it what we are when we seek advice from other like us, or look for health information on line.
Let’s stop promoting patient-hood as an identity. It is disempowering. I know Tom would agree that there is much more to life.
Kate Lorig, DrPH, is a genetic mutant, having been born with gaucher disease. She is a cancer survivor and has her share of common chronic conditions. She has maintained a fairly intense relationship with the world of health care and its inhabitants throughout her life. In addition, Kate is the director of the Stanford Patient Education Research Center, professor of medicine in the Stanford School of Medicine and a William Ziff Fellow at the Center for Advancing Health.