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).

Submit a guest post and be heard.