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“Patients” versus “Health Care Consumers”? Both, If You Ask Me
Over at DiabetesDaily, there’s been a series of discussions going on about How the Internet is Changing Diabetes Care — a topic about which I have many opinions (surprise, surprise). I was particularly intrigued to see Manny Hernandez’s piece about the implications of referring to us all as “consumers” rather than “patients.” He doesn’t much like it. I have a different take.
Manny’s concern is that viewing us as “consumers” puts a “bigger emphasis on how much profit the patient can make a company, which can lead to less-than-optimal decisions on behalf of the patient later on.”
The flip side of that, I believe, is the notion of “consumer = customer,” as in The Customer is Always Right. Isn’t it about time that healthcare providers and organizations started treating us “end-users” like valued customers — instead of just pampering the “insiders” who make the policy decisions and write the prescriptions? We end-users ARE their customers, after all!
The way I see it, there’s also a semantic issue at work here, the division between:
– healthy people who “consume” certain health offerings on an episodic basis (Health Care Consumers)
and
– people living with chronic health conditions (Patients)
People in the latter group (which includes all of us with diabetes) are for obvious reasons more intensely concerned with daily health issues, and generally more “plugged in” to health on the Internet. That makes us the most significant group of healthcare consumers, no?
[Photo: submitted by Terence for the TuDiabetes Diabetes Supplies Art campaign]
And let’s not forget, “Patients” aren’t what they used to be. In today’s world of medical advances, there is a whole new definition of the word: in the old days, patients were people who were laid up in the hospital. They were either healed of their ailment, and were able to get up and walk out (thus leaving their “patient” status behind), or they died. Period.
But today, there are millions of people living active, productive lives with chronic health conditions — up to 133 million Americans, according to some sources. It was author Jill Sklar who opened my eyes to just how fortunate we are, as the phenomenon of surviving and thriving with a chronic illness is a rather new development in the world:
“Surviving chronic illness is a relatively new concept in the history of civilization. Looking back over the last millennia, most individuals were lucky to survive long enough to reach adulthood,” she writes, pointing out that Lance Armstrong with his LiveStrong campaign was the first to “pierce the American psyche by adopting a symbol of survivorship.”
Today, I see a “Patient” versus a “Health Care Consumer” as someone with a chronic health condition who, due to that condition, is a lifelong, incessant consumer of health and medical products and services.
And there’s something else: the “Consumerizing” of health and medicine means that we can now shop for diabetes supplies at places like Amazon.com and eBay; we no longer have to go hunting for some specialized medical supply store. Ailments and illnesses have come out of the closet, and I for one think that’s a healthy development.
So am I a Patient? Absolutely. Am I also a Health Care Consumer? Yes, of course: one of the most important kinds — the “sick” ones — because I need to consume this stuff much more intensely than “healthy people” do.
Explore posts in the same categories: Diabetes Blogs and Web Stuff, Health 2.0
Amy, great post – interesting distinction. I’ve always tried to avoid the “patient” label when I can, because I think it diminishes the idea of the “person” who’s experiencing chronic and/or acute health care issues. But I kind of agree with Manny that “health care consumer” puts focus on the financial side of care. I guess I lean toward “client,” if I had to pick the word I’d most like to see used. That word indicates rights for both parties – folks who receive and give care – and a certain level of choice on the part of the recipient. In any case, it’s something I’ll be chatting about with my docs over the next few weeks!
Posted by: Jenni Prokopy - ChronicBabe | February 2nd, 2009 at 9:24 amI too can see it from both sides. The way that the OC has opened us up to so many different points of view is something that I really, really enjoy. Thanks!
Posted by: Scott K. Johnson | February 2nd, 2009 at 10:20 amGreat points!
When I tackled this in a post, one of the folks who commented noted that it might be good to put the titles in context, much like you did in this post.
I think of my patients as patients because I am a care-giver, that is the definition of nursing, if I am caring for you during an acute illness, you are my patient.
I am my physician’s “patient” whether I am there for a well-check or for an acute illness. I don’t feel diminished by the term, and at my age I have a few chronic conditions (high cholesterol, anyone?)
But when I search the web for information on high blood pressure (another of my chronic ailments), I am a consumer of health care in as much as I am looking for information and becoming informed on what medications are available and what equipment is most accurate.
I see the “patient” as a person who needs acute care or help coping with an acute disease, as in a hospital or presenting to an ER. If you come to my ER, you’re my patient. If you come to my hospital to attend a diabetes seminar or classes, you’re a client or health care “consumer”.
Every one of us is a health care consumer. Not all of us are patients. My husband has diabetes, he doesn’t consider himself a patient unless he suddenly develops a need for acute care. We can have a chronic illness or condition, but that doesn’t make us automatically “patients”.
The word “patient” is specific, IMO, and the relationship between “patient” and caregiver is unique and “client” or “health care consumer”, when you are dealing in an acute setting just doesn’t cut it, at least for me, speaking as a nurse.
If you don’t need direct “care” than you aren’t a patient. Maybe it’s that simple.
I have been told that in community services, the preferred term is “client”. I’ll see what that feels like in the fall when I have my community health practicum. : )
Posted by: Kim | February 2nd, 2009 at 10:52 amMaybe we need to come up with a new term that takes us away from both…
I was chatting with one of our Advisors at the Diabetes Hands Foundation a while back. He mentioned the term “biocitizen” (I believe), which I have a bit of a hard time relating to. But at least it doesn’t carry the connotations that consumer or patient may carry.
In any case, great points, Amy!
Posted by: Manny Hernandez | February 2nd, 2009 at 11:22 amWe all receive health care; however, the current system places all decision-making (beyond the decision to seek care) in the hands of the insurers and of the care-givers, and the apparent cost squarely in the hands of the insurers.
We are supposed to be “patient”, waiting for their paternalistic proclamations of power over us. To them, we are but the guinea pigs (did I say that? I meant “gamma testers”) for their latest concoctions, and paying pricily for the privilege.
The Internet has made a lot more information — both good and bad — readily accessible to the intrepid individual interested in protecting and maintaining his (or her) physical health. With that information, we are more apt to question “authority”, take an active role in our own care program, and complain about the comparative slowness with which solutions appear for our chronic conditions.
Perhaps, we have moved from “consumers” and “patients” to something new: impatients. Which pretty much defines all consumers and customers with “issues”.
Posted by: tmana | February 2nd, 2009 at 1:33 pmAwesome post, Amy! Manny’s blog post prompted me to write about this issue as well, though I looked at it more from the perspective of a Health2.0 site.
I think you make a great point about what these words mean for people who are living with a chronic illness, it’s not an either/or situation.
I’d love to hear your thoughts on the phrase we came up with to try and bridge this gap: Health Activist. (http://blog.wegohealth.com/2009/02/are-we-patients-or-consumers.html)
Posted by: Marie Connelly | February 2nd, 2009 at 2:18 pmAmy, great discussion about something I think about a lot these days. Let me add a third dimension to the patient/consumer label — CITIZEN. I spent some time in the early 2000s with the wonderful Jean-Claude Healy in the European Community. Healy was an early e-Health pioneer. He was the one who taught me the word “citizen” in the context of e-patients. When you consider what’s at stake these days in health reform — covering the un- and under-insured, people getting access to expensive specialty drugs, ad nauseum — citizenry is required for any engaged patient-consumer. Thanks for hosting this excellent dialogue. Your friend in the icy east coast, Jane S-K
Posted by: Jane Sarasohn-Kahn | February 2nd, 2009 at 4:55 pmHow about taking profits out of the equation so we can all just be human beings? “Health care consumers” is not a term I like at all, as both a patient and a future health care provider. My patients are people. Their life and their health is as precious to them as my life and health are precious to me. Thinking of sick people as “consumers” is another way of detaching from the reality of human suffering.
The core problem in our system is money. Doctors keep patients waiting because they triple-book 10-minute appointments. They are forced to practice cattle-car medicine by the demands of their clinic, or by overloaded hospitals and ERs, as insurance companies cut reimbursements, raise premiums, and enjoy astronomical profits. The long waits, the rushed visits, the hassle of dealing with the bureaucratic nonsense required for “reimbursement” creates an unequal relationship between doctor and patient, and unnecessarily complicates the efficient and empathetic delivery of health care. Why do we stand for it?
Insurance companies are poison in our health care system, insofar as we have a “system” — they are driven by greed and never by basic decency and humanity. I wonder how many insurance company CEOs would allow their own parents, spouses, and children to receive the sort of “health care” their company allows. For-profit health insurance is an abhorrent notion that has led to all sorts of nightmares. Let’s get the middlemen out of the equation (http://www.commondreams.org/view/2009/01/30-5) so patients and doctors can build a constructive relationship and together work toward the best health outcomes possible.
Posted by: Lauren | February 2nd, 2009 at 5:54 pmAt the community mental health agency at which I used to work, and at many agencies within the mental health treatment world, consumer is the preferred term. With a chronic illness, be it physical or mental, overly identifying with being a patient – and thus being ill, needing treatment, being under a treatment provider’s care, and all the implications that come with that role – can inform one’s perception of self in a negative way. Maybe this isn’t so much the case for an adult diagnosed later in life, but it can be especially damaging to the identity development of children and teens.
in the end it’s just semantics, but words come with meaning, connotations and associations that affect us, our perception and how we’re perceived within our environment.
As I said elsewhere regarding this issue, I don’t necessarily like the connotations that come with being a life-long patient, but now I associate consumer with chronic serious mental illness because of what I do professionally, so I definitely don’t care for that label either, even though it’s supposed to suggest being empowered. Is being called diabetic an option because I think I far prefer that.
Posted by: Lee Ann Thill | February 2nd, 2009 at 6:38 pm“in the end it’s just semantics,”
Yes, I agree.. but I tell them I am your Client.. Customer as well..
You don’t do right by me and I sue you…
Like Dr.’s Telling me that having a 7% A1c’s is good and just keep your BG’s btwn 110 and 150 and you’ll do fine..taking Months if not longer to help one figure out Carb Counting, Developing a I:CR ( Insulin To Carb ratio) CB ( Correction Bolusing) and or one of my favorites..you should do a CB at 1 or 2 hrs..even if your 300…
Incompetence is rampid.. I see it at least once a week in the ADA’s T1 Boards with people comming in with such MisInformation to just plain negligence by their Dr.’s..
The Latest one? was never told how to count carbs and Use a I:CR method ( using the 500 rule) let alone how to do a fasting Basil Test to Using the 1500/1800 rule for figuring out your sensitivity factors,etc..
And Of 6 Endo’s I have had over the yrs at the VA? NONE admitted to Knowing anything about Dr. Bernsteins or 3 other Books..Using Insulin, Think like a Pancrease, etc…
I send a copy of each to every New Dr. I get..and to their Nurses..
along with a note ” Please read by time I come in , in the next 3mos. so we can dicuss your Opinions and why I have 5.5% A1c’s following whats in these Books.. if you haven’t? I will have to change Dr.’s again..since we will not be on the same page” Thank you.
And I have Sue some as well as some nurses and Nutritionist..
On GP? Was more interested in selling me His Line of Vitamins and His Book on General Health.. and a Dermotologist? He tried to charge me $500 to remove a Mole that I had gotten a quote of only being $135 prior to comming in and after a examination… Only after Threatening to Sue and file Charges for Fraud did they drop it..
Another Visit in the Hospital? They charged me $5 for everytime I tested My own BG’s with my own Test Meter and Strips at 4 x a day.. ( i test 10x) found that the Nurse would put it down she did the testing…and would put in my Meter #’s….
So, we are Patients, Clients and Customers all in one..
Posted by: Dennis | February 2nd, 2009 at 8:54 pmAmy and everyone,
I’m really interested in this discussion and I like Health Activist to describe the segment of the population that I’ve been calling “e-patients” (see e-patients.net or my health reports on PewInternet.org). “Activist” captures something that e-patients cannot: the often-large network of people who surround a patient, such as friends, family members, etc.
Anything is better than cyberchondriac, in my opinion.
Susannah
Posted by: Susannah Fox | February 3rd, 2009 at 6:50 amWe are patients, medical consumers, but mostly we must wear the mantle of “medical clients”, while healthcare providers must act as “medical consultants”. This nuanced description implies that we will receive and act on the best professional advice available to us, musch as we would (hopefully) heed the best advice of our lawyer or accountant. There are rights and responsibilities for each party.
Posted by: Ken Oshan | February 3rd, 2009 at 2:53 pmI just read your post and I liked it. As you know, we “customers” are very sensitized about the role of the pharmaceutical business circus. Out there is a cold, commercial world, a show run by the pharmacy trusts. I believe the best role the internet is playing is the one regarding information. There is no reason why anyone should be misinformed nowadays, and misinformation with the intent of profit is cruel and unjust. And intentional misinformation, like hiding part of the facts, is the weapon that this group wields to engross their bank accounts. There’s just that part of society- the poor, the naive, and the elderly- on whom they always prey. Let’s do our part in countering misinformation!
Posted by: Jorge de la Rosa | February 3rd, 2009 at 8:55 pmSemantics tends to show us where we have been. “Consumers” fits with the overall consumerist nature of our culture–now being challenged by the over-extension that contributes to our economic woes. “Patient” reflects the health culture in which the issue of health comes up mainly after we’re sick.
But what about a word that encompasses people who are health conscious and pro-active in preventing illness and staying well? I like Susannah’s term “activist.” At least it makes room for people who are actively living to prevent illness.
I think one of the big challenges of the “e-patient” movement is to turn the thrust of its practices into a prevention, wellness-oriented movement. Online information and support Would be powerful there too, but it needs to come before we become either “patients” or “consumers.”
Posted by: David Collin | February 6th, 2009 at 12:48 pmforget about these words e-patient, or health consumer, or everything else everyone has been screaming how about this word: universial, as in universal healthcare where a government shows that it cares about the well being of it’s people instead of the current bankrupting of the american public. why should only a select few get to have the privilage of insurance when there are those as my self who can afford the best care but cannot even get a whiff of insurance in case something else non diabetes related where to happen to myself. as it stands right now i myself pay just for insulin, strips, and omnipods, looking out for the best deals and i am still paying over $20,000 dollars a year just for basic survival that is what is criminal
Posted by: jeremiah | February 7th, 2009 at 6:57 amI’m pretty sure that I graduated from medical school, not “provider school.” I am a physician, and my job entails interacting with and caring for entities that are called patients. While this is indeed a business (going over budgets, employee evaluations, insurance contracts and the like at night after being on call drives that point home), it is a very different type of business than Home Depot. I think it is a disservice to call patients consumers, and I believe that is a very demeaning and condescending term. While a person indeed will often see themselves as a consumer — for example, when deciding which hospital to use or which physician to see — once the doctor-patient relationship is formed, they should be seen only as a patient.
Posted by: Aggravated DocSurg | February 7th, 2009 at 10:30 amPatient or Customer? Neither.
Patient describes a business relationship too: I am only a patient when someone is getting paid. And the word patient carries baggage that comes from its meaning in regard to acute medicine; this acute baggage is inappropriate when referring to someone dealing with a chronic condition.
We can do better than modeling ourselves after the players in a business transaction or the passive language of acute medicine. Living with a chronic disease takes far more effort than establishing a handful of business arrangements or just being informed of what the doctor thinks is best. We should look to the business language of partnership or affiliation rather than the language of the business transaction.
Posted by: Bill Peckham | February 7th, 2009 at 3:31 pmI’m late to this post but Susannah Fox sent me over and I’m glad she did. I, too, was curious about the definition and use of the terms e-patient versus empowered patient and health consumer and ran some simple Google counts on them. Also, according to survey research out there I’ve seen, like it or not, we ARE acting as health consumers; healthcare IS a consumer marketplace. Maybe we don’t need to call “us” that, but it is the reality. For now, I’m sticking with the term e-patient and hope others adopt it more widely. My article, “What do you mean, e-patient?” is here:
Posted by: Kevin Kruse at e-Patient Connections | May 11th, 2009 at 1:55 pmhttp://blog.kruresearch.com/2009/05/what-do-you-mean-e-patient/