New Terms for New “Patients?”
The notion of Health 2.0 and the Participatory Medicine Movement has been gaining momentum. Now, more than ever, people are taking the management of their care into their own hands. As with any movement at a critical point of growth, debate about appropriate terminology is playing an increasingly important role. Although unanimous agreement is unlikely, semantic discussions can provide a vehicle to address key philosophical details.
An intense dialogue around patient terminology has emerged among the Society for Participatory Medicine members. Responses vary greatly but the question seems simple enough: What word should be used to refer to a patient?
The conversation has and continues to spawn insightful blog posts, such as those on JOPM.org, fredtrotter.com and e-Patients.net. But, below, we’ve provided select excerpts from both public commentary and the raw member e-mail exchange.
These comments bring up excellent issues but they don’t capture the full story. We’d like to hear YOUR thoughts. What is the influence of existing terminology? What is the potential influence of new terminology? Should certain terminology only be applied on a contextual basis? What does this debate indicate about the progress of the movement as a whole?
Other
In Support of a New Term
It’s Contextual
In Support of the Existing Term “Patient”
“The social movement revolutionizing all aspects of medicine cannot work with the old technology of archaic, passive language. And language is the most powerful technology we have - like the mother technology that makes us who we are, what we want and where we’re going possible.”- Lynne Farrow
“Participatory medicine goes far beyond the interactions between patients and health professionals. It is about the active participation of the individuals in their care. As such, like many others, the terms don’t bother me but the current practice of medicine does… Are you a patient only during the patient-doctor interaction or do you consider yourself a patient all the time?”- Gilles Frydman
“Nobody was born a doctor. Everybody was born a patient. [This is] not because of the medicalization of delivery, but because [of a] newborn’s need for someone - a parent, doula, midwife, doctor, stranger - to cut their umbilical cord. Some of those patients will one day do the same for others.” — Alan Greene
“Why not ‘users of health system’ or shortly ‘users’… They are using [information technology] to share and collaborate with peers and health system, doctors, nurses, etc.”-Manuel Armayones
“I alternatively use health citizen, health consumer, e-patient, patient, caregiver, et. al, depending on the context in which I’m writing/speaking.”- Jane Sarasohn-Kahn
“It does indeed seem that a historical definition of the word [patient] directly implies passiveness.”- Fred Trotter
“As patients/people continue to educate themselves and take an active role in guiding their care, the term patient has the potential to evolve on its own without needing a replacement. But, for that to happen, the term would need to be openly accepted by those who seek to change it.” — Lisa Emerich
“Like Lisa Emrich and others, I have never felt passive, nor insulted, by the term ‘patient.’ I truly dislike the use of ‘health care consumer’ and don’t feel ‘client’ is right either. A client hires someone to do a job for them, not with them as participatory patients prefer.” — Trisha Torrey
“[The term] client doesn’t mean the professional is working for you, it means the two of you are working on the issue together. A lawyer isn’t effective if he doesn’t have the full and active participation of their client. Therapy goes nowhere until the client wants to change and takes steps toward that change.” — John Grohol
“Removing the word ‘patient’ doesn’t make the doctor less-accomplished or the client any smarter. But it does remove the idea that there is a monopoly on medical knowledge and systems of care. Once you remove the monopoly idea, other concepts of privileged learning, institutionalized methods [etc.] are all fair game for questioning.”- Lynne Farrow
“At the end of the day, we are all patients - whether ‘em,’ or ‘e-,’ documented citizens or undocumented. If we want to communicate the precepts of participatory health and medicine, we can use the word ‘patient.’” — Jane Sarasohn-Kahn
“When we discuss whether we should keep the old name, ‘patients,’ or create a new name, we need to be clear if we are talking about something new for everyone, or just those that embrace a new ethos and responsibility. Are we debating a name for ‘everyone’ or a name for ‘us?’” — Fred Trotter
“In my book, I use the term ‘emPatients.’ EmPatient, at least makes them ask the question – what does that mean? It means empowered. It means participation. It means an equal partner. It’s different enough that it gets the conversation going among those who should be paying attention.” — Trisha Torrey
“… we are talking semantics here. The word patient explicitly represents the individual receiving care wherever and however that care is given. It should suffice.” — Nancy Finn
“[the current practice of medicine] is far too focused on the patient-doctor relationship, while over ~80% of medical care is self-care, without the presence of any health professional.” — Gilles Frydman
“… healthcare is a team sport and a solo flight, a wave and a particle…” — Alan Greene
“Changing labels won’t solve this problem. What is necessary is a behavioral reassessment by many of the participating parties… ‘Patient’ is a term of art simply implying ‘a person seeking or needing the services of a healthcare provider.’ Why change it? If it is seen in that context it is a perfectly fine word. It is the behavior of the participants that is the problem, not the word. We could just as easily stop using the term ‘doctor’ and replace it with something else. After all, in England all surgeons are referred to as Mister or Ms., not ‘Doctor’ at all.” — Michael Scott
“… the notion that patients are consumers is pretty weak, but the notion that they should be consumers is a great idea.” — Fred Trotter
“There will be different ways of looking at this depending on the context. For everyday problems, non-life-threatening, not complex, a change in use of the term ‘patient’ will have very different implications than in other settings where major injury or death is involved. Chronic problems differ from acute [problems.]” — Paul Bearmon
“Perhaps the next level of the discussion is to hone in on what it means to have a collaborative health care team consisting of the patient (‘e’ or ‘em’), the physicians, therapists, nurses, family members, etc. How does this collaborative team change the dynamic?” — Nancy Finn
“I do like the idea of using the word e-patient or something like it to denote a shift that can happen to change people’s relationship to their health and their health professionals: A fundamental perceptual shift occurs when the hierarchical, paternalistic view of medical care is replaced by an expansive view of the power of collaboration and personal responsibility to achieve health.” — Alan Greene
Alexandra Albin 
inchoate but earnest 
edbury 
Indu Subaiya 
Health 2.0 Developer Challenges
Lizzie Dunklee
Matthew Holt
Bianca Grogan
Emily Ebert
Deb Linton
I forgot to make a point “in support of keeping patient”. As I said earlier, Participatory Medicine goes far beyond the interactions between patients and health professionals. In fact since =~ 80% of medical care is self-care, why would you call people customers or client? These 2 terms completely negate the central role of the patient involved in self-care and keep everybody believe that all medical care happens in an interaction between a patient and a paid HC professional.