by Carolyn Thomas ♥ @HeartSisters
Maybe it’s because I’m not a physician, a nurse or any other type of health care provider. Maybe it’s because I’m merely a dull-witted heart attack survivor. Maybe it’s because I spent virtually all of my 35+ year professional career in the field of public relations. But the reality is that I seem to think about health care more like a marketer than the average person might, and as such, I’ve been puzzled for some time about recent quality of care debates on whether patients should be considered “consumers” or not.
In one debate camp, you have doctors like Dr. Atul Gawande, whose Big Med article in The New Yorker caused apoplectic sputtering among some of his colleagues when it was published last August. That’s because Dr. Gawande touted a national restaurant chain as a potential model of the kind of standardization and quality that have been so lacking in health care.
He argued, for example:
“The Cheesecake Factory delivers delicious meals that represent just the kind of affordable, reliable product that would better fit the budgets of cost-conscious health care providers – and meet the needs of their ‘customers’ – in the competitive new world of medicine.
The chain’s highly profitable and efficient model of quality control represents our best prospect for change in health care.”
In the other camp are the esteemed brainiacs over at The Harvard Business Review, who ran a column called The Trouble With Treating Patients as Consumers, which claimed:
“Treating patients as typical proactive, in control, well-informed consumers can backfire. Asked to take on increasingly complex decisions and digest ever-larger amounts of information, patients find themselves placed — often by design — in the driver’s seat.
“The ’empowered patient’ movement encourages patients to become hyper-informed and to take control over their care. But providing greater information, access and autonomy — so often successful in consumer settings — does not necessarily drive better care or experience.We see three main reasons why treating patients as consumers can create problems.
Patients don’t want to be there: People don’t seek out health care without a reason. Something is wrong and patients want to solve it and get back to normal. When patients are required to be proactive decision-makers, the health care system is often casting a very reluctant hero into the role.
Patients aren’t equipped to be there: Even when patients are willing to be decision makers, they may not have the tools. At a time of unusual stress, the system asks them to absorb technical information and make difficult decisions that require specialized expertise.
Patients aren’t in it alone: To design for patients alone is to forget that they are part of a complex system and aren’t often independent decision-makers. Decisions are shaped by other stakeholders: friends and family who support the patient, the insurance company who foots the bill, practitioners who provide care and expert advice, the hospital administrators who inform system-level protocol, and so on.”
These seem like sound arguments at first blush, especially if you’re arguing in favour of maintaining a status quo that is working well. But as Dr. Gawande describes his own health care system:
“Our costs are soaring, the service is typically mediocre, and the quality is unreliable. Every clinician has his or her own way of doing things, and the rates of failure and complication (not to mention the costs) for a given service routinely vary by a factor of two or three, even within the same hospital.”
Let’s take a look at that last statement: “... vary by a factor of two, or three, even within the same hospital.” Doctors call this “practice variation”.
But in my Ethical Nag essay called “Why Do Doctors Call It Practice Variation Instead of Poor Care?”, I questioned why, according to data published by Dartmouth Health Atlas researchers:
- – Medicare patients in Fort Myers, Florida, are more than twice as likely to receive hip replacement surgeries compared to their counterparts across the Everglades in Miami?
- – a person living in St. Cloud, Minnesota is twice as likely to undergo invasive back surgeryas a patient with a virtually identical diagnosis living in Rochester? (Rochester is home to Mayo Clinic, where surgeons are on salary and thus not motivated to do unnecessary surgical procedures)
- – Manhattan had the lowest rate of knee replacement surgeries (4.0 per 1,000) while Lincoln, Nebraska, had the highest rate (15.7 per 1,000)?
Add to these disparities. . .
- – the catastrophic losses caused by medical errors perpetrated on patients (the Institute of Medicine, for example, tells us that as many as 98,000 Americans die each year as a direct result of medical errors
- – the growing incidence of hospital-acquired infections in patients
- – the pervasive influence of the pharmaceutical industry on what’s now called “marketing-based medicine“ on patients
- – stent-happy cardiologists who are implanting unnecessary coronary stents while fraudulently altering the medical records of patients
- – the meek expectation that there’s nothing we can do about intolerable health care wait times or downright rude behaviour because we’re just patients
. . . and you have on your hands a crisis in consumer protection.
Here’s a real-life example. Hugo Campos is a California heart patient who does indeed think of himself as a medical consumer. He writes:
“Ever since I was twice misdiagnosed and mistreated for Hypertrophic Cardiomyopathy (HCM) – a potentially deadly form of cardiomyopathy, I’ve realized that being just a patient would lead me to my demise.
“Once I took matters into my own hands, educated myself about HCM and its management, fired the old doctors and picked out a new set of specialists, everything changed. Today, I am an empowered consumer of health care in the sense that I am the one in charge, not my doctor.
“That’s how a consumer is different than a patient. I learned the hard way that I should consult with my doctor as I do with my financial advisor. He gives me his expert opinion on my choices and the best course of action, and I decide what to do.
“After all, it’s my life and I am the one in charge.”
And here’s another real-life example: Toyota was forced to recall 8 million vehicles worldwide after news that at least 34 deaths had been linked to Toyota problems going back as far as 2004.
But compare those 34 deaths with the FDA’s estimates that the diabetes drug Avandia is linked to as many as 100,000 heart attacks and/or deaths in the patients with Type 2 diabetes who took the drug. Clinical studies have revealed that this drug increases the risk of heart attack by 43 percent, and can double the risk of heart failure after only one year of treatment. In fact, the Avandia death rate has been described by an Institute for Safe Medication Practices report as “more than any other drug we monitor.”
And as John Mack, editor of Pharma Marketing News, observed:
“If people are afraid to buy Toyotas, then based on average yearly death rates, they should be about 400 times more afraid to take Avandia.”
Yet, astonishingly, Avandia is still being sold and prescribed by physicians to their patients.
I just cannot help but wonder: if doctors started thinking of these patients as consumers, would they be more careful to avoid the very public wrath of a wronged marketplace?
So, let’s review: Toyota (because it knows full well that the people they make products for are consumers) has to recall millions of potentially dangerous vehicles to protect consumer safety. But GlaxoSmithKline (because they’re a powerful drug company that calls the people they make products for patients) makes a potentially dangerous drug – and the worst that happens is that the FDA forces them to put a “black box” warning on the drug packaging.
Oh, that – plus maybe the fact that they’ve been slapped with a $3 billion charge to settle U.S. criminal and civil probes into illegal marketing of Avandia and other GSK medications.
And that is why The Harvard Business Review has it wrong.
In fact, much of their article sounds downright patronizing (like the part about patients being somehow unable to manage shared decision-making because – Golly! It’s just so darned hard!)
I like what physician Dr. Joe Ketcherside has to say to his worried colleagues feeling reluctant to reconsider patients as consumers, actually able to make hard decisions about their own health:
“Normal people gather information on all kinds of topics and evaluate its content and reliability all the time.
“We have to decide what car to buy, how to refinish the floor, what type of mortgage to use on a home purchase, where to vacation.
“We often also have a job that has professional responsibilities and must maintain our knowledge of our specialty. We sometimes have actually gone to college and even graduate school where we learn all about doing research.
“So – sorry to the other physicians who disagree – but a great many of your patients are perfectly capable of researching their illness and in short order, knowing more about it than you do.”
In conclusion, we patients continue to reject the label of consumer at our peril.
Q: Should more patients take on a “consumer” role?
NOTE FROM CAROLYN: I wrote more about the complicated reality of becoming a “patient” in my book A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press, 2017). You can ask for this book at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (use their code HTWN to save 20% off the list price when you order).
- Say what? Do patients really hear what doctors tell them?
- Your health care decisions: don’t worry your pretty little head over them
- The lost art of common courtesy in medicine
- Experts: why so wrong so often?
- How a heart attack turned me into an “information flâneuse”
- When you fear being labelled a “difficult” patient
- Would it kill you to treat your patients with respect?
- My lowly beginnings as an empowered patient
- Stupid things that doctors say to heart patients
34 thoughts on “Why the Harvard Business Review was wrong about patients”
Let me guess you are a white college educated female with private insurance? The average American has an 8th grade reading level and is only at the 5th grade for medical understanding.
Even doctors don’t understand the difference between relative and absolute risks (you double the risk can cause one response vs the risk is 1 per 100,000 vs 2 per 100,000)
Very very few people shop for a car when they are ill or in a crisis and in fact people are advised to not make a decision in that situation. We know for example that people under extreme duress (like a life threatening situation) in fact bond to their “captors” and we see similar behavior happen to cancer patients.
Finally you aren’t “shopping” for care except for the rare lasix or plastic surgery you are in a system where everyone but you is paid to be there.. So yes there is no question we need to include patients in more shared decision making but for an acute health care problem doesn’t make them drivers or consumers.. People who however have a chronic condition should very much be empowered and driving their care.. sadly much of our health care problems are the result of behavioral choices and even doctors lack much training and skill in motivational change, nutrition, effective weight loss strategies. (who tells women for example you can cut your risk of breast cancer in half by being a normal weight) ?
So in most cases yes people are consumers but they are also sick – they are patients and the system itself has to empower them vs us asking them to suddenly go to medical school and over-ride their doctors advice.. Other docs rarely even do that so expecting a patient isn’t realistic
Thanks so much for your perspective, Dr. B. Nobody is suggesting that patients ought to “go to medical school”. But the reality of health care outcomes as outlined here is frankly appalling. And many of us learn the hard way, as I did, or as Hugo Campos did, or as millions of other patients do (often only when our very lives are at risk and we’ve had to struggle to “over-ride a doctors’ advice”) that we must embrace a consumer’s role in our own health care. I’ve spoken to thousands of women during my heart health presentations, and my observation is that what you describe may be a generational issue belonging to those who have happily grown up with their doctors telling them, essentially: “Don’t worry your pretty little head over that…”
Reblogged this on Framework 21.
Thank you Daniel!
Reblogged this on The Right Smile.
Thanks Dr. S!
You’re welcome. I look forward to reading more of what you have to say.
No argument about the importance of being a well informed health care consumer.
I think what is bothering you most is the lack of reliability in our health care system. A reliable system should give nearly the same answer (or treatment) no matter which health care provider you see.
If you buy a 2013 Toyota Camry, except for the color of the paint, they are remarkably similar. If you try to purchase 2013 good advice for your heart problem, there is little chance it will be the same from doctors in different states and sometimes even in the same town. If the system was more reliable people could rest easy with medical treatments, but as it stands, “caveat emptor”.
On a more hopeful note, there are things people can do themselves to reduce the “variations” in care. Always keep your own medical record and bring it to all visits, always have a written list of questions to ask at visits, insist your prescriptions are sent electronically (so computer error checking is done), and try to maintain continuity of care — make sure one doctor is coordinating your heart care.
Excellent tips on preparing for our next doctor’s visit. Part of the reason for variability in treatment lies also with the realities of “marketing-based medicine” in which physicians on the take from industry (flatteringly referred to as “thought leaders“) are paid to influence their peers in order to boost sales of drugs/devices. Sadly, a predictable outcome of a pervasive problem in medicine.
Just an observation: Last time I was in my doctor’s office there were almost as many drug sales reps as patients. You can always spot the reps — rugged guys with suits and briefcases or girls with short skirts and briefcases.
These reps are where the influence is exerted. When doctors say they need the reps to keep them informed, you know the wool has been pulled over their eyes.
As a patient I would really rather have my health care provider subscribe to the Medical Letter than see reps. Patients should complain about sales reps taking up valuable office time when it is hard to get an appointment. Perhaps patients should offer to pay for the subscription to Medical Letter or something like that to encourage the provider to give up the visits from the reps. We would all be better off.
Couldn’t agree more! There are some docs who are now refusing on principle to see drug reps – they can even order official No Drug Reps signage for their waiting rooms.
Reblogged this on Optimizing Healing Healthcare and commented:
“Carolyn Thomas writes a provocative and compelling article on the topic of patients as consumers. Highly packed with references to other articles, backed with data and written with the patient in mind, she makes a powerful case that patients are and need to be seen as consumers — contrary to the position held by a Harvard Business Review article. Read the full article here.”
Thanks so much, Doug.
Thank you for your thoughtful comments. We should look at patients and physicians as ‘partners’ in care. Each has their expertise to contribute to each other. Mutual respect is key.
I worry about the ‘business’ model in medicine, where we treat patients as ‘consumers’ or ‘customers’, not as individual, whole human beings. With the focus on the business & economics of medicine, we risk losing human connections and quality relationships between patients and physicians.
We’re working to enhance relationships and healing in healthcare, and created the International Charter for Human Values in Healthcare. The mission of the International Charter for Human Values in Healthcare is to restore universal core values that should be present in every healthcare interaction to healthcare around the world.
Please join us in promoting relationships & respect in healthcare around the world!
I admire the lofty goals of your organization, and I’ve just signed the Charter. Thanks for taking the time to share a link to it here.
Thank you for your support! We can all work together to restore human values, starting with compassion, to healthcare. We invite you to see our Facebook page as well.
Carolyn, another wonderful article.
When a person gets diagnosed, I think, sometimes we lose our voice, we become “patients.” Reading your article made it more depressing to think of all the mistakes our doctors are making and that we have to be ever vigilant to check them. I know it is our job to do so, in this health care market, but isn’t there a person who can help us with that. I’ve heard of a person whose job is just that. Not sure of the name, Hospitalist maybe?
Thanks Laurie! I’m thinking you might mean a patient navigator, typically seen most often in oncology. Here’s an interesting overview of the role from The Canadian Medical Association Journal. Most patient navigators here in Canada are nurses, although some programs offer peer navigators (for example, in Toronto’s Chinese-speaking community). In the U.S. you have a professional body of patient navigators, the National Association of Healthcare Advocacy Consultants.
I always found, when I had my practice, that many patients knew far more about their particular illness than I did and it would always behoove me to learn from them and discuss options intelligently with them.
After all, patients are usually far more motivated to learn about their disease process in depth; far more than their physicians, unfortunately.
Now that I am a patient much more than a physician, I realize I absolutely have to stay informed about my disease processes because certainly no one else is going to do that for me. It is difficult, especially when feeling poorly, to do all the research and learning, but unfortunately it is critical and potentially lifesaving.
I urge all physicians to listen to their patients and hopefully to learn a bit from them. Nothing wrong with learning.
Thanks for the great article. Again.
Thanks so much for sharing your perspective as both a physician and a patient, Dr. Ruth. You’re right – when we’re feeling sick, it can feel overwhelming to stay on top of so many details, but as you wisely remind us: “nothing wrong with learning!”
Wonderfully written — I couldn’t agree more!
I am the PR Director for Parallax Enterprises, LLC. We have a product in development that will empower patients to advocate for their own health. We understand that medicine cannot operate in the one-size-fits-all world. Each patient has a different level of comprehension and doctors should be able to communicate with their “consumer” on the appropriate level.
We also need to make surgery safer. Aviators have been using checklists since the 1930s and multiple medical studies have shown how valuable they could be in medicine. We incorporate aviation technology and checklist methodology into our interactive software system.
I would love to hear your thoughts!
Hi Karin – checklist/communication systems like yours are the way of the future. Some day I hope we’ll look back on things like avoidable medical errors and be truly horrified that we allowed this to go on as tragically as we did.
Carolyn – Please, please send this article to the Harvard Review, along with your bio. It deserves to be printed as a rebuttal to their original article.
You go, girl!
Thanks so much, Deborah. This post has already been reTweeted all over the Twitterverse this morning, so HBR is likely to see it.
Some physicians are more interested in covering their ass than taking care of patients, yet they do stupid things and say outrageous things.
Just because someone managed to get an MD doesn’t make them good at what they do; remember this one third were in the highest level of their class, one third in the middle and one third were in the lowest of their classes! Even the brightest if they have not kept up with the changes in their area of expertise slide down the scale.
I’ve met ’em all and I’d like to hit a couple of ’em with a bedpan!
Ask questions, demand clear answers and when not satisfied – change doctors! I hope I can take my own advice because when you’re in the ER you’re at the mercy of whoever shows up!
Next time you’re in the ER, Julia, I’d advise docs to watch out for those flying bedpans . . .
Awesome! Once again you are right on. Medicine needs to embrace the empowered patient.
Thanks – I agree!
As in any other consumer purchase of services, it pays to do one’s own research. After all, in this “service”, it’s your quality of life that is at stake.
If the physician can’t handle it, then find a new one.
Thanks for your comment here, Dianne. I’ve just recently found a new family physician (after a 35+ year relationship with my former doc) and it was surprisingly hard to leave despite many solid reasons to do so!
I enjoyed reading your excellent and thought provoking article. There are technology tools available right now that can greatly improve the patient experience.
Unfortunately, consumers are not aware of all the technology and solutions that are out there. Hospitals and Healthcare organizations that thrive will be the one’s that understand that the patient is their customer/consumer… and there are choices out there!
Have you heard about http://www.GetWellNetwork.com ?
Another example is that healthcare organizations that thrive are embracing transparency rather than avoiding it to protect their self interests. One such organization, University of Utah, publishes their MD’s patient satisfaction scores and comments online!
This transparency is absolutely necessary so that consumers can make an informed decision.
Consumers deserve to get the very best patient experience.
Thanks Eric – I suspect that for every high-tech magic cure in health care, there’s a low-tech “high-touch” solution already in use by good doctors out there. Thanks also for that link to the U of Utah MD scores.
I totally agree! Technology is not a magic cure– it’s always up to the people who use the technology as a tool. It really comes down to the “culture” of the healthcare organization.
I remember reading a sign that said a happy MD + a happy Employee = a happy Patient. I think this is oversimplifying things, but the premise is that if an employee is over-worked, unmotivated, disengaged, then the patient suffers. In addition, if the MD has these or other issues, then the patient suffers as well.
So how do you change the culture of a healthcare organization? I think it comes from the top down. Does the CEO round on patients? What does he/she say? Does the CEO really show empathy to the patient and their family? Does the CEO regularly communicate with his/her employees, MD’s, Rn’s? Patient centered care requires a team approach that starts with the leader.
Changing the culture comes from the top. It would be great to see transparency at the leadership level of healthcare orgs.