Patients Don’t Believe the Evidence! What’s Wrong With Us?

The journal 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!

etc etc etc

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.

PS – think this is blown out of proportion? See what real patients have to say.

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4 thoughts on “Patients Don’t Believe the Evidence! What’s Wrong With Us?”

  1. Great post, Tricia! Complicated issue.

    One thing that I haven’t seen mentioned in response to the Health Affairs article is the issue of flawed research and/or journalism. I am a researcher and I can’t always keep up with various health study findings. For example, over the years, I have seen conflicting evidence on whether or not cell phones may have a negative effect on your health.

    I have reached a point of research fatigue. X is bad for you. Oh, X is not bad for you. Oh, wait, X really is bad for you.

    This may not be exactly the kind of research they were talking about when they discussed “evidence-based research,” but I do think we have become (rightfully) cynical. The problem now is that people don’t realize that the kind of research they’re talking about – evidence-based research – has been vetted pretty thoroughly compared to health research in general.

    I think expecting everyone to understand this distinction is a bit much. And it’s not really fair to interpret study findings, especially when they make a judgment about patients, without involving patients in the process. And they wonder why patients are apathetic? I think it’s because we don’t have the energy to sustain our frustration at being an afterthough in health care, health research, and health reporting.

  2. Dennis (Investigator/Negotiator)

    Okay, Trish, I can see that having someone point the finger at you is a bit of a drag, but isn’t that what you do in your book? I thought the bottom line of “You Bet Your Life” was, “You have to take control of your healthcare.” This study seems to be saying the same thingh. I think you’re making the mistake of taking umbrage at hearing the larger set (Patients) scolded when your own smaller, better-informed subset (EmPatients) is not at fault. Yes, the system is based on making money. Do you expect that to change? I don’t. In the meantime, we all need to be better-educated patients and learn to communicate our needs to our physicians.

  3. Dennis (Investigator/Negotiator)

    Part Two:

    After carefully reading through the communication toolkit, I feel safe stating that it was NOT written for patients. It was written to be read to patients, to attempt to indoctrinate patients. The problem the toolkit attempts to address is the enforcement of evidence based care quality standards. In other words, they don’t want patients and their relatives making waves when they say, “Sorry, we can’t authorize that $300,000 experimental procedure for Uncle Jerry’s Prostate Cancer, even though it is his only remaining chance for survival. Experimental procedures–especially expensive ones–don’t yet have enough evidence to back them up.” The developers of the kit have noticed that patients tend to think their doctors should have the authority to make that kind of determination and not leave it to the uninvbolved members of a quality control board.

    On the one hand, they have a point. Some doctors are just shoot-the-moon cowboys. If they’ve run through all the viable options, their happy to start trying every crazy idea that comes along looking even vaguely promising. Allowing that kind of behavior could get expensive.

    On the other hand, if the quality board says no to any procedure over $100K that offers less than an experimentally-based 25% chance of recovery for over two years, how do they know Uncle Jerry’s not exactly the kind of tough old bird likely to be in that lucky 25%? They don’t. His doctor might, though. This is where patients get in an uproar over non-sense like this toolkit. It’s not that they don’t understand evidence-based proofs. It’s that they have hope, and sometimes hope is all you need to transcend the numbers.

  4. What about the many patients who come in demanding an MRI because of a knee injury? And the times that I advise that given the nature of the injury, an x-ray won’t be useful. And that this is type of injury that takes TIME to heal.
    Another example seen several times a day: A generic drug would be just fine to treat the problem with. But no, they want the one they saw on a TV ad put out by the profit greedy pharmaceutical company. But since their drug copay is only 5 dollars more for the brand name than the generic, and the ads say it’s better and more wonderful than any other medication, that’s what they want.

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Trisha Torrey
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