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Relativity and Reality

November 19, 2008
by Joe Bormel
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Relativity and Reality
Correct diagnosis and treatment decisions require Rich IT


As I reflect on the Healthcare Informatics blogs over the last few months, half of the bloggers have shared stories of their family's experience with the healthcare delivery system. It is a profound experience when you become reliant on the services of the industry you strive to serve. The lessons shared have been personal and profound. They always highlighted the importance of an attitude of responsibility and caring.


The grace and sophistication to provide appropriate and comprehensive care, patiently delivered, may be impossible the way our systems are often constructed. I'll share one personal example involving my daughter, but similar things have happened to me and each member of my family, involving diagnostic testing and treatment selection. All of which have had good outcomes in the short term. No one, nor science, knows about the long term of course.


Underlying the desirable future state of care delivery is “Rich IT.” That is, documentation, ordering and economic accounting of care that is broadly based, beyond the antiquated but current model we have today.


My daughter required surgery to lengthen several muscles, which would correct a minor gait issue. We went to two experienced pediatric orthopedic surgeons. They were both confident with their recommendations, but the second opinion wasn't close to the first.


It turned out that an adequately precise diagnosis and assessment of treatment required something called a Gait lab. In our industry, that's called measurement of the current state and the outcome.


Gait labs are expensive to run and are generally not reimbursed; we were told that there weren't any within a hundred mile radius. For general clinical use, that's true.


We ultimately got a third surgical opinion that didn't match the first two, but was informed by a Gait lab assessment, by a surgeon who routinely does pre- and post-surgical assessments of his own work, and participates with a consortium of like-minded surgeons. (The kind of measurement discipline so well elaborated by fellow blogger, Doug Thompson.) We were feeling more confident, but we still had three very different surgical opinions. The fourth surgical opinion, also informed by a second Gait Lab, was a
hopeful and conservative subset of the three earlier opinions. We had the surgery last summer and my daughter is doing great.


My major point to this story is that half of the opinions were inadequately informed.


There are several great biographies of Einstein that I've read (Gleick, Isaacson). Each tells the relativity story in this way.
Two cities, hundreds of miles apart, each have a clock tower perfectly synchronized with the other. To an observer standing halfway between them, they sound and appear to strike noon simultaneously. When standing close to or next to either one, it appears to strike noon before the clock tower that is far away. In a very gross, human sense, the clock tower near you in this scenario is always ahead of the remote one. So the experience of the observer is not "truth," it's relative to where you're making your observation. You truly can't say observation is right without referencing where you were standing.
That’s relativity.


It’s messier than that in healthcare. In my example, each of the four surgeons was confident, from their perspective, that they were prescribing the best treatment. Two of them were clearly inadequately informed. Although IT alone can’t fix that, care coordination and delivery systems with competent policies embedded as content could fix the relativity problem.


I’ve recently had to deal, first hand, with similar relativity situations involving diagnostic radiology and, in another patient, management of hypercholesterolemia. Similar motif: dismissal of previous opinions and advice guided by relativity. A bias for overstating benefit and understating risk --- and conclusions that often didn’t adequately consider the patient situation and values (patient preferences).


I started this post with a graphic, which I believe summarizes the grand challenge that relativity places on HCIT.



Note the bottom left, labeled “1” – when there is medical certainty and social agreement around a medical decision, as there ultimately was for my daughter, policy and HCIT need to provide efficient, cost-effective coordination of appropriate care. Four opinions, redundant testing, delays and parental anguish are bad. Respecting the “relativity” built into each of the opinions, a process that served us in the past, is antiquated. Availability of resources, in our example, the Gait Lab, needs to be built into a rational care-coordination model.


Not addressed here are methods to do this, such as tight, internal Mayo or Geisinger referral models, or payment models like Medical Home. But whatever the method, the reality is that relativity needs to be recognized and put in its place, framed by Rich IT.


What do you think? Are our healthcare decisions so complex and personal that four different "second opinions"is a desirable thing? Do you believe that the collection and study of clinical inputs and outcomes, along with economic considerations can lead to a system with less variation in opinions?




Topics

Comments

IA,
Thanks for your observation.  As we discussed (on the phone), my expectation was that the second opinion would validate the first opinion.  Or, at least most of it.

Any professional, doctor, health system executive, lawyer, business executive, etc, would ask "why do these opinions differ?"  When there's unique 'expertise' build into that opinion, it's harder or impossible to sort that out.

I wrapped it all up into the broad heading, "Relativity", to offer a model of why we can't always expect two people to share the same truth.  That model relies on spatial distances, and the delays caused by the speed of light and sound.  It turns out that there is a better model that reaches the same conclusion.  I'll write a full blog on this soon, but here's the skinny:

Neuroscience has been developing rapidly, as techniques like functional magnetic resonance imaging let's us see blood flow in the human brain, as we do mental tasks.  We can also see the impact on 'normal' people, as opposed to people with genetically-inherited, objectively different behavioral tendencies.  And, we can, in some cases, see changes in response to drugs which are correlated with, we think, restoring 'normal' behavior.  Most of this neuroscience is 1 to 5 years old at most.  It's implications are discussed at length in recent different popular books by Gore(Assult on Reason), Medina (Brain Rules), and others.  Okay, okay, so what's this got to do with Relativity and multiple opinions in healthcare?  And, for that matter, Rich IT?

It turns out that brains don't simply recognized patterns, as the older science had us believe.  Thanks to the Dopaminergic-based Learning system in our brains, we each recognize things we see, hear, smell, or remember, based on the predictive value it has for us rewarding us personally, based on our prior learning.  This isn't surprising; any grandmother would say "I knew that already."  But, it's very different than 'the eye is a camera, seeing what's there' and the 'the brain recognizes the features that constitute a line, shape, face, or grandmother.'

Our healthcare system (and probably most other social systems that are important to us) are set up with the assumption that all credentialed people can recognize stuff, more-or-less equally well.  Or at least, well enough.  Recent brain science shows that human prediction follows the same laws as Einstein-ian Relativity.  The specific observer profoundly impacts what they can and will observe.  Neuroscience also establishes that their prior learning (aka training) isn't sufficient to predict their future behavior.

If you're inclined to learn more, watch this video on your next break or treadmill session.  It's one hour.  If you're into leadership, there's a wonderful section on the relationship of all of this to the alpha-male in the social group, was well as the female role in detecting this in monkeys.  It also addresses risk taking, which clearly creates different medical opinions or recommendations in the context of our discussion here.  Terry's style is very available and he is a critically recognized expert in neuroscience.  I also know him to be a great rollerblader!


I think there are at least two implications to take away from all of this:

1) We should expect second opinions to differ from the first, especially when the patient situation is complex, and, the people offering the opinions have distinctly different training and temperaments.  It may mean that one of the opinions is less relevant.  As informed by relativity, the different opinion may also be completely concurrently correct and relevant.  This is hard for laypeople and doctors. ... and especially for moms and dads, in this case.

2) As we use information science and neuroscience to improve healthcare delivery systems, we need to evolve to EBO.  EBO, or evidence-based outcomes, is an evolution in EBM that specifically recognizes the classification problem we've been talking about here.  Rich IT, then, is the combination of an adequately competent HIS, combined with an appropriate knowledge management program to incorporate EBO into real clinical workflow.  Very hard today.

In the case of my daughter detailed above, two of the opinions had no EBO data to stand on.  They had no multi-year follow-up data.  There outcome was that they got to do the surgery.  The other two opinions, in contrast, had multi-year follow-up data, including that of other like minded surgeons, pulled together.    

[I've gone on a little longer than usual in this comment, because I've received a lot of interest and positive feedback on this post, both in emails and phone calls.  The topic resonates with a lot of people.  I greatly appreciate all of the feedback and encouragement.]

Mark,


Thanks for commenting and for your questions.  Regarding caring for loved ones as a doctor, I need to start with 'proverbs'


“For with much wisdom is much sorrow; as knowledge increases, grief increases.”

[Ecclesiastes 1:18]


  and


My definition of an expert in any field is a person who knows enough about what's really going on to be scared.
P. J. Plauger, Computer Language, March 1983

Regarding being a physician facing confusing and conflicting medical advice: it's uncomfortable, even though I understand why I'm getting discordant surgical opinions.  My education informs we where the variation comes from.  During my MPH training, I took an entire course on 'Physician Decision Making Under Uncertainty.'  In an earlier blog, I cited three causes:  Attitude, Knowledge and Behavior and referred to this diagram:



Although it ideal to describe things simply, most single-factor explanations of complex phenomena are wrong.  So, in my daughters case, here are the big factors, in my opinion.  "Lack of Reimbursement" led to "Lack of Self-Efficacy", and "Lack of Familiarity" with Gait Lab analysis.  That led to "Outcome Expectancy" that adequate measurement, pre and post surgery is unnecessary.  That led to 2 surgeons, one at A I duPont and one at UVA having opinions with considerably more power of evidence behind them.  Power means larger numbers of patients with careful, methodical measurement and attention to follow-up.

The short answer to your question on 'Relativity' is this:  the patient (and/or their family for children and elder care) should be given a written guideline.  "Here is the range of things we see, here's where you fit."  The two surgeons who had Gait Lab studies did exactly that.  Then, based on that 'classification,' their opinions had meaning.  When we do this for these patients, 50% get better and remain better through adolescence.  50% get better but require a subsequent surgery.  The doctors without a written guideline and clear classifications, half of my four opinions, had less power-of-data to bring to the discussion.  The fact that they could have and didn't came from an absent or antiquated guideline.

The 'relativity' issue is recognizing the burden of the observer (doctor) to realize where they are observing from.  People without Gait Labs, in my experience, have a tendency to under-utilize them.  People with resources, skills and talents, in some studies, have a tendency to over-utilize them.  Guidelines, coupled with appropriate reimbursement strategies are critical.  It's also critical to collect adequate cost and outcome data, routinely as a by-product of care delivery.  I know I'm preaching to the choir in this blog.  That said, it's not built into to any major payers' reimbursement scheme. 

In my daughters case, Gait Lab analysis should have been the easiest thing to get, without asking or driving the system through multiple opinions.  Poorly classified or unclassified patient conditions, especially when major interventions are the next step, is very problematic.  That's basic service quality.

Regarding your broader question, "how health care delivery must change," I think STEEEP covers it.

Thanks again for asking.

I've really enjoyed reading your blog. Your post on your daughter certainly triggered my fatherly instincts. It's hardly an eloquent reaction, but let me just say "ugh". What a rotten experience. I'm so glad the outcome was positive. I'm also glad it wasn't an emergency situation, so that you had time to get the additional opinions.

Tom,
Thanks for your observations and feedback.

Your concise positioning of 'art' is appreciated, as is your framing of the shared, complex frustration.

I'm glad you appreciate the visuals (diagram/drawings).  Our intellectual leader here, Editor-in-Chief Anthony Guerra has been coaching me: the more complicate the concept, the more important the visual diagrammatic summary.

Anthony Guerra
Editor-in-Chief

If you're intrigued by the potential of 'evidence-based medicine' and the ambitious forefront of translational medicine, you'll probably find my post "Science 2.0" worth a quick read.  (It also contains a humorous diagram, "The Course of Science.")

Joe Bormel,
Your comments and perspectives here are extremely valuable. One of the things that I think most frightens and confuses patients and their families is when they contemplate how different individual physicians might come to different conclusions regarding the same patient situation. Of course, the idea of the second opinion (or even third or fourth) is long-enshrined in medicine, but that doesn't mean that patients and their families aren't anxious about it. And when one factors in all sorts of considerations that aren't purely clinical, it's enough to make patients run screaming from the room.
One aspect of all this that I would love for you to address is the fact that, in dealing with your daughter's situation (and I'm so glad to hear her outcome was successful), you yourself were a physician facing confusing and conflicting medical advice. Do you have any thoughts on this, as a physician who was in this situation also a parent? Also, with regard to that position of "relativity," did you have any insights as to how health care delivery must change, as you experienced your daughter's situation as a family member, in terms of service, or along any other dimension? Thank you for your wonderful insights, as expressed in your blogs on this site.
Mark Hagland

Joe,
Thanks for sharing your story. In a bittersweet way, it's interesting to know that doctors can have just as much trouble getting good care as non-doctors. We could absolutely relate to your experience.

Thanks also for your description of relativity. My wife said, "Finally, I get Einstein's relativity!"
-anonymous

The discussion of the practice of medicine usually includes a reference to "the art and the science of medicine." As long as there are limits to the information available to inform the science, there is always a place for the art - which I would take to mean the intuitive sense of what would be most efficacious based on personal experiences, observations, and subjective interpretation of the literature.

I think there is some frustration that the capability of data systems to process objective clinical data and combine it with objective outcome data is expanding very rapidly but is held back somewhat by both the pace of adoption of electronic health record systems for digital data capture, standardized nomenclature to describe clinical observations in these digital systems, and barrier-free sharing of the standardized clinical data and outcomes without compromising patient privacy. We have already entered a time when technology can enable personalized determination of the most effective treatment protocols (whether drawing on gait studies, or individual genomes). However, as you note, it requires ready availability of these diagnostic tools, studies that confirm the correlation of the diagnostic data and outcome, and trust by the providers in the value of this information.

I have heard some providers comment on what they call the "Amazon Paradox", that is that Amazon.com can mine their own data bases using collaborative filtering to take the meager input from your search criteria to point you to the most frequently ed items by people with your same interests, and provide some rank order of the quality of the result (user rankings). They put it in front of you 100% of the time, in seconds, and you have to choose to ignore it. The paradox comes in that medicine cannot accomplish the same level of almost instantaneous decision support drawn from clinical indicators and outcome data, when the importance of the outcome is so much more important than ing the right book or CD.

We really have so much farther to go in "evidence-based medicine" than just standardized order sets. It will be interesting to see if ambitious projects like caBIG will bring about the overwhelming positive impact that spiders out to all areas of clinical research and treatment.

BTW - I always enjoy the diagrams and drawings. Some test my "2D perceptive ability".

Jerry,
Thanks both for posting a comment and for highlighting the critical role of patient expectations. As you pointed out, the gap between outcomes and expectations is important. I was introduced to this in 1993, when there was a lot of attention to this with regard to Prostate Cancer and the role of surgery. At that time, many men did not appreciate the impact of incontinence and sexual dysfunction, common to the surgical approaches of that era. The social and economic behaviors of the time down played the role of patient preferences.

As per the theme of this post, today's healthcare experiences are still operator-dependent. Family's experiences vary greatly. In my case, my mileage varied as well, ultimately seeking care in Virginia and Delaware. It shouldn't be necessary; it's a big part of the 'duplicate test and procedure' cost side of healthcare.  It's also part of the special appreciation we've developed for our caring and comprehensive providers.

Some of the recurrent feedback I've received from this post? Lots of people undertake 'heroics' to get adequate care. Whether insured or uninsured, it's a 'pure cost, no added value' aspect of our healthcare system.  Many of the stories are longer than mine, and with sadder outcomes.

Thanks again, Jerry.

Joe,

You've certainly provided a valuable context for me in how to assess medical options presented by physicians. We've had numerous discussions with care providers over the years for a special needs daughter and palliative care for elderly relatives.

You mentioned risk taking in your response. It brings to mind the work of The Northern New Cardiovascular Disease Study Group. They are (or at least were last time I reviewed their research) attempting to measure patient expectations and risk tolerance prior to cardiac surgery. The premise was to match outcomes to the varying expectations of each patient. This may be an important dimension of incorporating EBO into clinical workflow.

Regards

Joe Bormel

Healthcare IT Consutant

Joe Bormel

@jbormel

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