Patients don’t believe the evidence, blame our healthcare system

Health Affairs reports on a study that finds Evidence That Consumers Are Skeptical About Evidence-Based Health Care.

According to the abstract,

We found many of these consumers’ beliefs, values, and knowledge to be at odds with what policy makers prescribe as evidence-based health care. Few consumers understood terms such as “medical evidence” or “quality guidelines.” Most believed that more care meant higher-quality, better care. The gaps in knowledge and misconceptions point to serious challenges in engaging consumers in evidence-based decision making.

It goes on to explain how they did the study, how they drew their conclusions — and the bottom line is that we patients are making poor and expensive choices, we patients need to begin engaging more in our own care decisions, and therefore, and until we do, we will continue to be at fault for the huge cost of healthcare.

As their next step, Health Affairs developed a communication toolkit. But – just as every other group that tries to analyze patient behavior has done — it was developed for patients, to be given to patients (through their employers) — but nobody worked with patients to develop it.

However — the study, the toolkit and the journal report have completely missed the boat on why patients don’t believe evidence. In fact, it has very little to do with evidence at all.

Here’s why:

Because the American healthcare system is based on profits — and the less engaged we patients are in our own decision-making, the more money there is to be made. As long as someone can make money from our need for care, we patients will continue to be manipulated so they can make their money. It’s not about evidence.  It is about maintaining and increasing profit.

Some examples:

1.  Providers are not paid to talk to us.  In fact, they can’t wait to get us out the door.  Their goal is to make as much money they can from us — which is fair — but the system says that they have to do that by seeing as many patients as they can in their day.  More patients means less time per patient.  That approach, of course, is driven by payers. But how are patients supposed to discuss options with someone who won’t spend time with them?

My perspective as a patient:  I have symptoms. I am scared about what they mean.  The doctor won’t take the time to explain them or answer my questions.  He intimidates me, but he’s still the gatekeeper to all my medical needs, so I don’t dare make him mad.   I would love nothing more than to discuss options — but exactly who can I have that discussion with?

2.  Providers can make money by running tests and doing procedures – so they recommend all the tests and procedures they can get away with.  Further, they know that the paper trail of tests and procedures may cover their backsides one day if I ever sue.  That approach, of course, is driven by payers.

My perspective as a patient:  I have symptoms. I am scared about what they mean.  The doctor won’t take the time to explain them or answer my questions.  He intimidates me, but he’s still the gatekeeper to all my medical needs, so I don’t dare make him mad.  When he tells me I have to have a test or a procedure or take a certain drug, I just nod my head because I’m put on the spot. I don’t know the questions to ask, and even if I did, the doctor has left the room before I can even think to ask them.

3.  Providers are rewarded by writing prescriptions for expensive drugs.  (And don’t tell me that’s no longer legal because we all know it’s still going on — it’s just more covert.)  They are paid to speak at dinners, or they get their CME cruises paid for, etc….  Payers may encourage a prescription for a generic, but even that is no longer as true as it once was.  They’ve pretty much thrown in the towel – now they just charge patients a larger co-pay.

My perspective as a patient:  I have been diagnosed by the expert — the doctor.  He suggests I take a certain drug. When the prescription is written for me, as I sit naked in his office, I have no way of knowing what it’s going to cost me when I pick it up… What I do understand is that a few months ago when I asked about a generic I was told that one didn’t exist for what I need.  Even if I ask, I’m afraid the doctor won’t be happy with me, and since it took me two months to get this appointment anyway, I just don’t want to rock the boat.

4.  Providers own equipment and facilities.  They encourage patients to use that equipment and those facilities.  MRIs, surgery centers – you name it, physicians own it or they are employed by the people who own the equipment.  Those leases need to be paid!

My perspective as a patient:  I just know I banged up my knee and the doctor needs to look at it.  He tells me he’s sending me down the hall for an MRI.  What am I supposed to do — suggest I get an x-ray be done somewhere else instead?  Seriously.  Suppose he says no and gets mad?  My knee hurts today — I can’t wait another couple of months for an appointment with a different doctor!

Perhaps by understanding our patient perspective on our interface with the system, you’ll better understand the bottom line to why we don’t make the choices that evidence or money suggests we should.

We don’t trust the system.  And we are afraid not to trust our doctors.  Doctors are the gatekeepers.  They are the front line.  They are the ones who help us live and who may cause us to die – and we are intimidated.

Until the system shifts to a place where we can be partners, and feel as if our input will be listened to, considered, and respected, then there will be no massive shift in how patients influence their own care decisions, whether for evidence or money reasons, no matter how many communications toolkits are developed. My regular readers know that I have never been about a victim mentality.  I have spent the last 5+ years writing and speaking to patients about getting past these hurdles. If there is anyone engaged in improving how patients approach their care, I’m at the front of the line.

But I’m also not willing to accept the blame being heaped on us patients as if we are children who haven’t yet done what we’ve been told.  You can’t flip a switch, tell us we are wrong, and that we are expected to change, when there is nothing about the healthcare system that will allow for that change.

Bottom line — as long as everyone in the healthcare industry is out to make a buck off our patient backs, there will be no improvement on a grand scale.  Period.

That’s evidence we all understand.

Trisha Torrey blogs at Every Patient’s Advocate and is the author of You Bet Your Life! The 10 Mistakes Every Patient Makes (How to Fix Them to Get the Healthcare You Deserve).

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  • paul

    how things are-

    me: you do not need a CT scan of your head. the evidence shows that patients presenting the way you do have only a 1 in 10,000 chance of having a serious problem in the brain that a CT would pick up.

    patient: 1 in 10,000 is not good enough. order the CT. after all, i am not paying for it. and if i don’t get a CT and i am that 1 in 10,000 i will sue you.

    me: i’ll order the CT. after all, i am not paying for it. and i don’t want to be sued.

    how things should be-

    me: you do not need a CT scan of your head. the evidence shows that patients presenting the way you do have only a 1 in 10,000 chance of having a serious problem in the brain that a CT would pick up. you will not get a CT unless you pay for it yourself up front. if you choose not to, i am protected from being sued if you have a bad outcome because i followed the evidence.

    patient: sounds good. i’m glad my chances of having a serious condition are so slim.

    OR

    patient: i’m nervous about those odds. here’s the money for the CT scan.

    of course the second scenario would require me to carry an umbrella with me at all times. i imagine the flying pigs would be creating quite a mess!

    • paul

      wait.. i should probably add to “how things are”-

      me (where i left off): i’ll order the CT. after all, i am not paying for it. and i don’t want to be sued.

      insurance company/CMS: remember that CT scan you had ordered? well, it turned out to be negative so we’re declaring it medically unnecessary and refuse to pay for it. your options are:

      1) keep trying to collect from us- even if we eventually cave we will have at least gotten to invest the money during the lag time we have our lackeys playing stall tactics with you.

      2) send a collection agency after the patient. at best they will hate your guts and at worst they will be forced into declaring bankruptcy trying to pay your bill!

      3) fail to collect from anyone and raise all the prices on the things you CAN collect on to make up for the loss, thereby continuing our health care death spiral into financial oblivion.

    • HJ

      How about:

      Doctor: the evidence shows that patients presenting the way you do have only a 1 in 10,000 chance of having a serious problem in the brain that a CT would pick up. Since it doesn’t cost you anything, I am going go order it anyway so you won’t sue.

    • gzuckier

      MD: I’m not going to order a CT scan, because your chances of being killed while driving to get the scan are much much higher than the possbility of the scan coming up with anything important.

      • http://drpauldorio.com Paul Dorio

        paul: good comments. I like the scenarios. Very point-making.

        HJ: sort of just restating, aren’t you?

        gzuckier: seriously? Not reality-based, my friend. paul has it right on the head. If we don’t think it’s necessary, and don’t order it, you can only lose when the patient decides to get the scan somewhere else and then sues for any reason under the sun, including the fact that the symptoms haven’t resolved and the “illness” remains undiagnosed. It’s a customer-driven world, regardless of any finger-pointing, blame game. (And, no Trisha, I’m not pointing the finger at patients, so much as the system which includes both patients, doctors and also the insurers and administrators.)

  • Winslow Murdoch

    I am a primary care doctor. You certainly make a lot of assumptions about doctor kickbacks from Pharma, insurance formularies not caring about generics, and freebies to most front line doctors. these are untrue in my field and 20+ year practice experience.

    I do think that patient centered medical home style care will solve many of the other issues that you note correctly. Currently, this PCMH model of care is provided by a few pilot projects funded by a few large hospital systems- read subsidized payment for calling emailing and better servicing patients.

    Concierge private retainer fee based practices also solve these service related issues as well.

    Winslow Murdoch, MD

    • r watkins

      I can’t share your trust in the “patient centered medical home.” If you look at the details (for example, “Future of Family Medicine Task Force Six”), it is assumed that the doctor will have a larger patient panel and spend LESS time with each patient. Demonstration projects, requiring large subsidies, do not present a viable financial model for the vast majority of America’s primary care physicians.

  • DrA

    They’d believe it if they paid for it. Plain and simple. By the way, to the fool who thinks I get richer sending scripts for Lipitor than simvastatin, your really need to get acquainted with the facts.

  • http://dign.eu Pieter Kubben

    I agree with Paul. Nevertheless, I think this post is valuable: we may not have or be able to change the facts, but we may be more eager in communicating our thoughts to patients in a way that misunderstandings as written in the post are less likely to occur.

  • http://fertilityfile.com IVF-MD

    Whether directly or indirectly, people are generally agreeing that it’s bad to have a third party footing the bill for medical care. It leads to loss of accountability, patient dissatisfaction as a result of their inability to vote with their own money, and doctors making decisions that are not medically wise. Whether or not it’s realized, people are coming to their own conclusion that the free market, while not perfect, sure beats the pants off the system we have now. Now’s the time to engage in respectful discussion based on critical thinking so that we can all have better lives. :)

  • http://nostrums.blogspot.com DocD

    I can’t see that the article above has anything to do with the study in Health Affairs. It was about the psychology of more is better, newer is preferable, and more expensive is higher quality: our inability as humans to alter belief when confronted with evidence. These are flaws built into our capacity to reason, doctors and patients alike.

    It’s an issue for us in everything we do.

    Nothing I read had to do with blame.

  • PainDocAnon

    This is a great post, as it illustrates so many facts and fallacies. I am inspired to respnd as a specialst:

    1. “Providers are not paid to talk to us.. can’t wait to get us out the door…” yes and no. Blame your employer/insurance carrier for the current system of being underpaid per person seen. I don’t know how the primary care doc’s do it. I’ll spend an hour talking to a patient and get behind if I think it is productive. If doctors continue to be paid by the patient to “talk”, soon a patient’s only options will be to “talk” to a cost-effective midlevel (physician assistent, nurse-practitionaer, “noctor”).

    2. “Providers make money by running tests and doing procedures…” No and yes. We make nothing off ordering tests unless we have a fiduciary interest in the test/ lab / radiology suite (highly controlled under current law) or do it on-site. In fact, I order as few tests as possible because following up a test is time consuming for no money at all… I order a test in the interest of my patient. I do make more money when I do more procedures. So what? Any company or business that works harder to help more “customers” will be better off. I am so busy that I have a line out the door to “do procedures” so I glady avoid a procedure or treatment if I think it is best for the patient (because I am a good doctor who helps people…. imagine that).

    3. “Paid money to write prescriptions, cruises, CME’s…” this is just flat out false. Propoganda, not true, doesn’t happen.. Again, highly regulated and in some cases illegal. Recently had a drug rep lunch to educate us on a new product, told anything I ordered had to be “less than $14.99 due to the new rules”. The salad I wanted was only $6.99 but I cancelled the lunch out of principle. Ultimatley, the patients are the losers in this situation ($6.99 was a bargain).

    4. “Providers own equipment and facilities…” can be good or bad. Example: I have my own office-based fluoroscopy suite for spinal injections. I make $80 in hospital, or $500 in my office per injection. Why? Overall, it is cheaper for you ($20 vs. $100 copay) and the insurance company ($500 vs. $1200-$2500 for the same procedure). I provide a faster, better, cheaper service to the patient. I make more than the same doc in the hospital because I save you and the system millions per year, only for an extra couple hundred thousand (that’s called economics).

    I think the author insults my own patients as blundering idiots afraid to offend their doctor (me). In my experience, the opposite is true, patients are informed and use the time they have with me well.

    And to be my own devils-advocate… If I make 300k as a business, and the employed/hospital doctor makes 200k, couldn’t we really have a winning system that pays all doctors 100k for the same great care? Yes, maybe, but that is socialism. You always get what you pay for.

    I am truly sick of this “doctor’s pay” issue. I am really good at what I do, and make a lot of money for it. And also, I know of no doc in my specialty who would take the risk, stress, and liability to take a pay cut to as little as 200k per year who wouldn’t in a HEARTBEAT take 60-80k to be a carpenter, landscaper, accountant, baker, retail store owner (happy person). It’s not all about the money, it is about RESPECT and TRUST (both of which this author has none).

    • stitch

      Bravo. I’m a primary care doc, I am employed, I certainly can’t claim to get all the kick backs mentioned, I’ve never given a paid talk. I appreciate the author’s perspective on what patients think but that’s far from what I see in my practice, where patients come in well informed. The gross mischaracterizations in the post absolutely reflect a lack of respect and trust and when so-called “patient advocates” go around with such a perspective, continually promoting the idea that docs are out for docs first all the time, without exception, then the essential contract of the doctor-patient relationship is as damaged from that side as from that of the professional.

    • Matt

      “And also, I know of no doc in my specialty who would take the risk, stress, and liability to take a pay cut to as little as 200k per year who wouldn’t in a HEARTBEAT take 60-80k to be a carpenter, landscaper, accountant, baker, retail store owner (happy person).”

      Only someone who hasn’t lived on 60% less than what they’re making in a long time knows of literally no one who wouldn’t do it. You’re not being serious about the lifestyle change, not to mention the stresses of those jobs.

  • stargirl65

    I admit to number one. But if I don’t keep things moving I will not cover my overhead. If I don/t cover my overhead then I can’t keep my doors open. Then who am I helping? If you want more time with me then you need to get insurers to increase thei pay to me. Most have not increased their rates for 10 years and there is no negotiating with them. It is take it or leave it.

    As to the other numbers, they don’t apply to me. I make no money off the test, labs, etc that I order. I only do a few procedures in my office and most are patient requested (remove a mole). I do not attend pharma sponsored lectures etc because they are biased and basically just sales presentations. I give vaccines but my profit on vaccines is about $1-3. Sometimes I lose money on vaccines.

  • PCP MD

    This is a good article because it provides insight to physicians in terms of what assumptions alot of patients may bring to their doctor visits. The comments section provides the rubutle view, giving patients some insight into assumptions their doctors may have.

    Two points speak loudest to me:
    “Providers are rewarded by writing prescriptions for expensive drugs…”

    In an article claiming to be evidence based, this statement is certainly not. In fact, from my experience, I have found the opposite to be true. My first impression was that this is just foolishness and not worthy of discussion. But, some patients actually believe this nonsense and they bring it with them to their office vistis like some chip on their shoulder. It is clear that even without evidence, the author does actually believe this statement, based on her parenthetical comments in that paragraph.

    Second:
    “We don’t trust the system…” followed later by, “Until the system shifts to a place where we can be partners, and feel as if our input will be listened to, considered, and respected”

    It is very difficult to help a patient who comes to me who automatically doesn’t trust me because of misguided infpormation that they absolutely believe to be true, even in the face of contradicting evidence. How, as a physician, am I supposed to handle those patients? How can I help them if their beliefs are based on assumtions and heresay and not reason? When I am stating the facts, supported by evidence, and they don’t believe it, just what exactly do they want from me then? I am truly at a loss, because while I sincerely wish to validate a patients feelings, I cannot give validity to misinformation that poisons the doctor patient relationship.

    This article, as well as the one last month on this site about Assumptions, caused me to think about the assumtions I bring to the visit with me, and hopefully how I can better communicate with patients, hearing them while also attempting to reason with them.

  • Matt

    Do you guys really have anyone to blame but yourselves that the public doesn’t see you how you want them to? You get paid for moving us through on an assembly line basis, a payment model that has until lately served you quite well and you were quite happy to partake in.

    Now you’re upset because we’re cynical? Until you’re willing to abandon the payment model, and actually do it, not just talk about doing it, and recenter the relationship to fee for your knowledge, not just access to procedures, not much will change.

    • http://drpauldorio.com Paul Dorio

      Okay typically-adversarial though always thought-provoking Matt:

      Exactly how would you propose that each of us doctors dispenses with the current system, by which we all try to earn a living, in order to improve our public personae? How exactly should we “abandon the payment model, and actually do it,” whatever “do it” really entails?

      Or is it, perhaps, the system and not the doctors who make the whole ball game happen? Insurers, fee-for-service, reimbursement for “doing,” administrative requirements, legislative oversight, legal aspects, etc.

      Hard to see how we doctors could effect that type of change, even if it were a plausible suggestion.

  • Alina

    Trisha, fabulous post!

    As a patient many times I wonder when a test is ordered if it’s really necessary. Not because I have to pay anything out of pocket because I don’t.

    I wonder when some physicians are claiming “evidence shows” which evidence is that? Clearly the way the system has been operating for many years doesn’t allow for much evidence or even knowledge of most diseases.

  • http://patients.about.com Trisha Torrey

    Just now catching up with comments… the best part of a platform like this is what I can learn from others.

    For the MDs who have responded saying that my suggestions or assessment about what you get from pharma is over-hyped or untrue or unfair – or any of the conclusions I’ve drawn might be misrepresentations…

    My points were to help you understand the general mindset, including fears, intimidation and assumptions your patients may be experiencing – NOT suggesting they are reality. These are patient perceptions, whether or not they are based on anything that is true in your world.

    In my book, You Bet Your Life!, I talk a lot about point of view. I try to help patients understand provider points of view – how your world functions under the constraint of payers who make it almost impossible for you to do your jobs, and patients who never fill prescriptions. How you can’t keep your lights on and your staff paid unless you see enough patients during your day. How primary care, in particular, is strained by a system not set up for it to succeed…

    But point of view needs to go in both directions. If you, the provider, believe patients think in one direction, when they really think in another – then communications aren’t nearly so successful (and therefore treatment can’t be) as you would like. Nobody wins. Nobody is satisfied.

    I love this kind of dialogue! We all come away learning more about points of view. It’s the first step toward fixing a very broken system.

    • http://drpauldorio.com Paul Dorio

      Nice follow-up.

      As they say: “it’s all about perception.”

  • http://www.medicalbilldog.com/blog/ Dennis (Investigator/Negotiator) at MedicalBillDog

    Trisha, you’ve made some great points. I’m afraid your emphasis on finances clouded the issue. I don’t disagree with everything you’re saying about financial incentives, understand. I just think this was the wrong time to bring them up. Looking over the responses from the MDs in the comments, I see that most of them missed many of your other points.

    PainDocAnon, you make some great points and then turn around and mess up. You say

    I think the author insults my own patients as blundering idiots afraid to offend their doctor (me). In my experience, the opposite is true, patients are informed and use the time they have with me well.

    Well, if you’re my pain doc, thanks, but a lot of your other patients are old, feeble, and confused. I’ve talked with them in the lobby. Half the time, they don’t know what you’re doing to them or why.

    As for your fluoroscope, I agree with your reasons for having it and don’t begrudge you that equipment. If it were an MRI, I wouldn’t be so accepting–especially if you sent every other patient for an MRI for every little bruise, break, or owie. Likewise oncologists who own infusion centers: don’t trust ‘em. Never will.

    Anyway, as I said at the outset, the doctors responding to you have clearly focused on the financial charges. The patients, you’ll note, have mostly said, “Yeah! You go, Girl!”

    I, myself, have taken on this question of EBM and its oft-ignored counter experience-based medicine. I was going to write a blog post on that very topic, but it grew out of control and will now be at least three (possibly four) posts. Keep an eye out at http://www.medicalbilldog.com/blog

    –PS

    Trisha, you’re usually pretty good at tracing the money. You know, the originally survey was conducted by the American Institutes for Research (AIR), the same folks who built the Communications Toolkit. I don’t suppose you know anything about their funding, do you?

    • http://drpauldorio.com Paul Dorio

      Dennis:
      You absolutely hit the nail on the head! People have got to realize that the Stark law exceptions, which allows physicians to own scanners and lab equipment in their offices is simply a way to make money through over-utilization. Take, for instance, imaging over-utilization: The group with the most rapid increase in utilization? — non-radiologists who own scanners.

      Close the loophole and you eliminate a large component of over-testing.

  • William Nuesslein

    Medical care is subject to the tragedy of the commons. People, including doctors, want to maximize their take from the entitlement to benefits from social or private insurance.

    As to profit: in 1980′s dentists in New Castle, New York wrote to the town recommending fluoridation of the water supply.Fluoridation effectively reduces the demand for dentists!

    When Blue Cross/ Blue Shield put in a second opinion program in the 1960′s, if my memory is right, operations actually increased.

    The attack on profit and doctors is naive at best.

  • http://drpauldorio.com Paul Dorio

    I find some comments to be very challenging to interpret. “tragedy of the commons.” “maximize their take from the entitlement to benefits…” But I’ll try:

    e.g. “maximize their take” – as if doctors try to make as much off each action as possible. Seriously? People need to stop thinking like this. It’s not common behavior.

    “from the entitlement to benefits from social or private insurance.” – I can only assume that implies Medicare/Medicaid. – To ignore the fact that doctors don’t have any control over what those entities pay is simply “naive at best.” (A radiologist gets reimbursed $8 for a chest x-ray. That’s it.)

    “operations actually increased.” – they would, wouldn’t they? It shows that two doctors can have differing opinions. Two people look at a situation and come up with two different courses of action. If one doctor thinks that a person could benefit from surgery, do you think the other doctor will put his career on the line and tell the first guy that he should just sit on his laurels and wait? In the interests of helping people, it usually doesn’t work that way. — What if he’s right? What if it really is appendicitis and not just gas pains?…