Wednesday, July 11, 2012

Too Much Information or Too Little Education?

Today I read the excerpt from a book that, as a patient educator and advocate, really set me off.  The title of the Scientific American article is: "Can Too Much Information Harm Patients?" and it is essentially an excerpt of the book The Creative Destruction of Medicine: How the Digital Revolution Will Create Better Health Care (Basic Books, 2012), by Eric Topol, a professor of innovative medicine and the director of the Scripps Translational Science Institute.

I began reading with an open mind, thinking to myself  "Okay, this guy could go in either direction with this.  Let's hope it goes right."  I am all about the digital revolution creating better health care, and I foresee a lot of really amazing things in the future of medicine as a result of the changes that are becoming necessary for both physicians and patients in this new world where information is so easy to get hold of.  

But things went terribly wrong... 

The way I read the article/excerpt (you can read it yourself and tell me if I went wrong) the author feels that patients need to be kept in the dark about "extra information" for their own good.  Are we, after all, simply paranoid ignorant people without the capability to understand our own bodies nor our physicians?  Should information be withheld from patients as a result?  

My take on the author's statements lean toward this explanation:  Because we are incapable of understanding what is best for us, we simply should not be told the truth for fear we will make irrational decisions based upon that fear and our ignorance.  We will be taken advantage of because of that fear.

The word *sheep* comes immediately to mind.

This reminds me of an altercation I witnessed in a restaurant during a headache symposium which involved two folks which will remain nameless here.  The advocate was confronting a doctor of psychology who felt it was necessary and prudent to lie to patients because they couldn't mentally handle the truth.  After much discussion the two colleagues had to agree to disagree. 

I wrote about this topic several years ago, a blog entry for WEGO Health which may be found here.  I have not changed my opinion nor my disdain for physicians who are not forthcoming to their patients.  In the immortal words of e-Patient Dave (who incidentally found out by accident he had cancer, then used social media to find a cure for it) - "Gimme my damned data!"

The test's job isn't just to diagnose, but to educate - both the physician and the patient.There is no such thing as "extra" information because it is all important.  It just may not be applicable today.

The physician's job is not just to diagnose and treat, it is also to educate and support the patient so that appropriate and smart decisions are made by that patient.

While I do understand the story the author Eric Topol mentions in the excerpt, I can't help but feel this patient was cheated.  Not because he paid for a test he probably didn't need that day, but because nobody felt the need to educate him about what the test and the results might mean for him.  When he received news that there were abnormal findings, nobody took the time to educate him what those findings meant for him.  He was offered a procedure, but wasn't educated about his options.  Once he underwent the procedure he likely didn't really need, his mistake was not really discussed with him in a way that he became an educated patient more likely to make better decisions in the future. 

This patient was failed by many.

This man wasn't failed because he was told about his "extra information".  He was failed because he was not appropriately educated by people who should have known better. 

This is a country that focuses entirely too much of our efforts on fixing the problem, when we should be looking at the cause and fixing that instead!  Let's prevent disease, not wait until there is a life altering problem to do something about it.

I do advocate for testing.  However, I do that in the context of education.  Let's teach patients how to be good patients.  

Let's talk...
  1. About their condition/disease/disorder.  A well educated patient makes smart choices about their care, not decisions based on fear.
  2. About the test itself.  Are we looking for something, or ruling something out?  Why it is being done and what we hope to learn from it.  Are there other options to get the same or similar results?
  3. About their results.  What this means to the patient's specific circumstances and future.
  4. About their treatment options. What are they? What are the potential outcomes? What will likely happen to the patient if they treat, or choose not to treat?
  5. About the importance of second opinions. Life changing therapies shouldn't be initiated without at least one of these.
Give patients their data.
The fact that so many patients are taken advantage of by a system that sees them as an ATM, only serves to prove my point that the wise patient takes the bull by the horns and makes sure they are adequately educated.  There is a need for online places to go to get the education patients are being denied.  The least that a harried-doctor-without-enough-time-to-talk-to-a-patient-to-educate-them could do is prescribe a good health community to do his/her job for him.  Thankfully, this is happening more and more frequently.

Consider for a moment the impact that this "extra information" could have had when the patient in the excerpt eventually did begin to have symptoms of his condition. Think of the time he could have had to educate himself about his options.  Hmmmm.

In the end of the excerpt, the author seems to at least in part agree with me, saying that the consumer needs to be able to understand the information they're given or trouble will likely ensue.  I am just of the opinion that all information is important, because you can't use a crystal ball to see into the future and tell the patient that it isn't ever going to be important.

I would love to read the rest of his book to see if the author produces a balanced discussion, but that will have to wait for another time.

In the meantime, if you're a patient, get and keep paper copies of all lab reports and imaging reports.  Don't depend on anyone, doctor or nurse, to tell you your results.  Get them for yourself and start asking questions. 


Migrainista said...

I agree with you - there is no extra information. We should get all the information, and education along with it.

Ellen Schnakenberg said...

Thank you Migrainista! Now, to get our physicians to see it our way :)