Perception and Reality: Data Does Not Speak for Itself

One of the hardest gaps to close when talking about the patient’s experience with health care professionals is the difference between perception and reality.  On one hand, medicine focuses on specific measurements and concrete responses to those measurements.  There are thresholds for determining whether a test result is normal or out of alignment.  There are national standards that require hospitals to report how quickly they provide best-practice care and how infrequently they provide non-best-practice care.¹ On the other hand, patients often come into healthcare with preconceived beliefs or expectations about what best-practice care looks like.  When these collide, both physicians and patients can become very frustrated.  I will start a series of essays exploring specific places where the perception versus reality tension can create confusion and even conflict.

I have written before on my personally-hated phrase, “the data speaks for itself.”  As a statistician I find that this sentiment is rarely true.  Today, though, I want to talk about the fact that this also poses problems for patients as they navigate a sea of data.  Before patient portals and federal laws mandating that patients get access to their medical records, a lot of what happened in healthcare fell under the adage “no news is good news.”  If you had some lab work performed, your provider might only notify you if the results were non-standard.  So, if no one called, it meant that everything was normal.  Or it might mean that the test wasn’t completed yet.  Or, maybe, the act of calling you fell between the cracks as everyone thought someone else was calling you.  But silence was golden, at least until the patient thought it was problematic.  With the advent of the patient portal, healthcare has now put the onus on reviewing test results on the patient.  If something is troubling, the provider’s office may still call, but this now creates a very quiet perception vs reality tension as patients are left to review their results in isolation. 

Data Does Not Speak for Itself

This tension can be easily illustrated in a yearly conversation I have with my wife.  Every year, as part of my physical, I get a standard panel of tests on my blood.  Every year, one pattern draws my attention.  As I review my data in the patient portal, all of my blood measures—white blood cell, red blood cell, platelet count, hemoglobin, hematocrit, etc.—are all low.  For example, on a scale of 4.0 to 11.1, my white blood cell number is 4.87.  I am no doctor, but I am a statistician and I can tell you with a high degree of rigor that 4.87 is way closer to the bottom-end of the scale than it is from the midpoint, let alone from the top-end.  When I mention to my wife, a nurse, that my scores are low, she reviews them and simply says, “they are all in the normal range.”  In a broad sense, both analyses can be true.  My scores are in the normal range, but at the low end of the normal range.  Why does this matter?  Because my perception can drive my behavior.  Whether my perception drives me to do unwarranted things (like taking supplements, eating liver every day, or following quackery online) or my perception simply increases my anxiety about a potential future problem, I am a prisoner of my own concern.  This can be compounded by the fact that, without a health care professional living with me, my behavior might run wild with no external input. 

So, the healthcare professional will say, “the data speaks for itself.  All numbers are in the normal range.  See you next year!” while not realizing that the patient is coming to their own conclusions.  Combining what one remembers from their Life Sciences class in middle school (white blood cells protect against infection) with what we have all learned about cancer from movies, television shows, and books,² it is not hard to wonder if that nagging cough is allergies or emphysema.  I mean, it is allergy season, so I have stray coughs.  Now I have low scores on blood work?  Blood is pretty important, so LOW doesn’t sound good.  I better find a photo of myself that looks halfway decent, before it is too late.

Consider how often in our lives we can see the same thing happening and interpret it differently.   I was at a baseball game with a friend of mine.  The lead-off batter crushed the first pitch into what would have been a towering home run, had it not been about three feet foul.  I thought that this was an ominous start to the game, perhaps foretelling of a bad outing by the pitcher.  My friend Greg, said, “Nope, that is just a long strike.”  Two people saw exactly the same thing and had significantly different responses to it.³ 

One could point out that this may have as much to do with general optimism or pessimism, like the glass half-full/half-empty scenario.  I think, though, that this is too simplistic.  You cannot really evaluate the general mindset with the answer to that question, if you are not factoring in the expectation.  If you sit down in a restaurant and the waiter brings over silverware and water, but your glass is not full, you might complain, “Hey, my glass is half-empty!”  On the other hand, on Halloween, you set out a self-serve bowl of candy for trick-or-treaters because you are out of the house.  You might expect that some self-centered child would empty the entire bowl into their bag and it would be gone in the first fifteen seconds.  So, when you get home and discover there is still candy in it, you might remark, “Hey I can’t believe it, the bowl is still half full!” 

So, whether my blood work constitutes a glass half-full or a glass half-empty says far more about my expectations than my overall attitude about life.  For me, the blood work reinforced a consistent pattern.  Ever since I started looking at my test results, those numbers have hovered at the low end of the scale.  I have accepted that I live at this end of the spectrum and so the glass is half-full, because they have not gotten worse.  I don’t stress about it.  I mentioned above that this is a yearly dance I do with my wife, so clearly my observation of low numbers is more performative than evidence of actual concern. 

But this is driven mostly by the fact that I have a body of work to refer back to and the fact that I have a loved one who can provide a calming anchor.  If I did not have these things, I might be alone in the wilderness.  My doctor may call if the numbers are out-of-range, but he doesn’t give the actual numbers any thought.  To him, I am “normal.”⁴

Healthcare is full of these perceptions and realities.  Even if you remove hypochondriacs from the equation, who may always be waiting for the other shoe to drop, there are plenty of times when there is a gap between what a professional accepts as reasonable and what a lay-person feels is troubling.  Fixing this, though, is challenging. 

It is unreasonable for me to expect that my doctor, seeing my test results, might imagine that while the numbers are normal, that I might still be concerned about the low numbers.  Doctors are not normally known for their codependence.  In fact, I might not be worried about the numbers until he calls me to tell me not to be worried about the numbers.  Perhaps that would make me worry about the numbers.  It is easy to become a snake eating its own tail in this situation, trying to account for every emotion and counter-emotion.   The best one could hope for is that, were I to reach out to my doctor and ask if these numbers indicated that I was in urgent need of an up-to-date professional photograph, he would calmly explain that these numbers were normal.  Ideally, he might even ask before the blood-draw, if there were any concerns I have had, so he could manage my expectations.  This focus on managing expectations will be critically important to finding a safe space between reality and perception as we go.  But more on that later…

¹For example, there is a “time-to-CT-scan” measure for potential stroke patients that is a best practice measure.  On the other hand, there is a “antibiotic prescribed for acute viral sinusitis in adults” measure that tracks how often a physician will perform not-best-practice care and bad antimicrobial stewardship.

²Everyone knows how quickly “movie cancer” progresses. 

Scene 1: Main character coughs a couple of times

Scene 2: Main character sits in a doctor’s office

Scene 3: Main character is wearing a knit cap

Scene 4: Main character’s photo is propped on an easel at the funeral

³For the record, that batter subsequently struck out and went on to go 0-for-5 on the day, with four strikeouts, which is referred to in baseball as the “golden sombrero.”  Meanwhile, the pitcher managed to get the win. 

⁴ The use of quotes there is purposeful.  I am implying that while my test results fall within the acceptable range, my overall normality is still a judgement call.