When Patients Know More Than You Do: The Case For Knowledge Exchange.

Posted on | December 11, 2013 | 1 Comment

Mike Magee

The patient-physician relationship is a powerful source of social capital in the U.S. and around the world. In surveys of thousands of doctors and patients between 1998 and 2002, the relationship was viewed as second in importance only to family relationships and far outstripped relationships with religious leaders, employers, and a host of others. The studies, conducted in the U.S., UK, Canada, Germany, South Africa and Japan defined the relationship as three things: compassion, understanding and partnership.(1)

At the time of these studies, the relationship between patients and their physicians was actively transitioning – from paternalism to partnership, from individual to team approaches to care and from physician directed decisions to mutual decision making. Empowerment had given way to education, and now education is giving way to advocacy.(2)

The demands of aging family members, the availability of electronic and mobile search engines, and the expansion of universal insurance anchored in personal responsibility, all conspire to focus the modern health consumer on knowledge. There’s a great deal at stake – financial and otherwise.

When it comes to knowledge, American Medicine has been playing it fast and loose for some time. The problem has little to do with the manner in which we acquire knowledge (rigorous research supported by peer review), nor the manner in which we deliver it (although it is needlessly delayed, lacks standardization, does not often meet the needs of low literacy, and often under-delivers as a communications package).

The real problem with knowledge transfer in the modern age is twofold.

First, the information provided often lacks adequate basic science knowledge underpinning. In medical school we learned physiology first, then pathophysiology (mechanisms of disease/disorder), and then the various treatment options. But in practice, many physicians show little interest in even attempting to provide context by communicating the basic science of normalcy, before moving on to disease and the fix for it. As a result, the knowledge provided is usually attached to the fix (often a drug), and the incomplete weighted context is provided by the manufacturer.

Second, physicians continue to have significant difficulty in answering a patient/families questions with the reply, “I don’t know.” or “Here’s what we know so far, but that will certainly change.” or “Our knowledge of this, at this point, is at best incomplete.” This weakness, along with the fact that a reversal of knowledge is usually hoisted on the public without a communications plan, let alone an apology, suggests a casual interest in patient inclusion and welfare.

Case in point: The timeline of sleep medication.

For all of my life, and most of my father’s, doctors have been prescribing sleep meds. The succession of offerings for the entire second half of the 20th century had a similar mode of action. They activated gama aminobutyric acid (GABA) receptors in the brain. GABA is a main inhibitory neuro-transmitter in the brain. Activating these receptors slows brain activity and promotes sleep.(3)

Beginning in 1950, we’ve had barbiturates, bezodiazepines (Librium, Valium, Dalmane, Halcion), and zoplicones (Lunestra, Ambien, and Sonata). Their problems – dependence, tolerance, short duration, unpredictable behaviors sometimes associated with sleep walking, accidental overdoses, and suicide are well known to all doctors, and most patients, and are the primary topic of discussion between the physicians who prescribe these, and the patients who receive them. But it’s unlikely that most of these patients ever heard or saw the words GABA.

It’s less likely that they, or at least a portion of their prescribing physicians, have ever heard of orexin ( also called hypocretin). Masashi Yanagisawa and colleagues at the University of Texas Southwestern Medical Center at Dallas first described this neuropeptide and two associated neuro-receptors in a paper in 1998.(4) The receptors were important because that made the mechanism “druggable” or potentially able to be activated or blocked by a exogenous chemical agent. A series of studies have demonstrated that orexin results in “wakefulness” and is effective in treating both animals and humans suffering from narcolepsy, a neurological sleep disorder which causes affected individuals to drop into deep sleep and loose muscle control at the drop of a hat. (not good). Alternately, it has also been shown that blocking the effect of orexin on orexin receptors promotes sleep without leaving you hungover or dazed when you awaken.

As is often the case, the discover of orexin resulted in a 180 degree shift in the basic science understanding of sleep, and could have a profound effect on therapy for a range of conditions.

So where did I learn this? I learned it in an article by Ian Parker called “The Big Sleep” in the December 9, 2013 issue of The New Yorker.(5) And where did Ian get his information on the physiology, pathophysiology and treatments for insomnia. He got it first hand from a group of pharmaceutical company researchers and academic medical researchers working with the pharmaceutical companies.

And herein lie my points:

1. There is a continuing significant research to clinician lag in knowledge transfer.

2. Knowledge penetrance on the health consumer side is often more successful than on the health provider side. (translation: your patients know something you don’t.)

3. And part of the reason for that is that doctors are more interested (and supported by pharmaceutical and device companies) in treatment of disease then in the continuing evolving story of human basic science.

The anecdote:

For Health Professionals – Commit to communicating to the patient the basic science context for every treatment you will prescribe before you pick up a prescription pad.

For Health Consumers – Remain wide eyed and enthusiastic to learn everything you can about how your body works. Read, listen, learn, and share with your caring professionals. And whenever you see a doctor or nurse, always ask at least once before you leave, “How does this normally work?”

For Health Commentary, I’m Mike Magee

References:

1. Magee M. The Evolution of the Patient Physician Relationship: Emancipation, Empowerment, Education. May 13, 2002. World Medical Association Meeting. Geneva, Switzerland. https://www.healthcommentary.org/?page_id=5985

2. Magee M. “Relationship Based Care: Strengthening The Patient-Physician Relationship” in Connecting With The New Health Care Consumer. (editor, Nash D.) McGraw Hill. 2000. http://www.amazon.com/Connecting-New-Healthcare-Consumer-Defining/dp/0071346724

3. Bowery NG, Bettler B, Froestl W, Gallagher JP, Marshall F, Raiteri M, Bonner TI, Enna SJ (June 2002). “International Union of Pharmacology. XXXIII. Mammalian gamma-aminobutyric acid(B) receptors: structure and function”. Pharmacological Reviews 54 (2): 247–64.

4.Sakurai T, Amemiya A, Ishii M, Matsuzaki I, Chemelli RM, Tanaka H, Williams SC, Richardson JA, Kozlowski GP, Wilson S, Arch JR, Buckingham RE, Haynes AC, Carr SA, Annan RS, McNulty DE, Liu WS, Terrett JA, Elshourbagy NA, Bergsma DJ, Yanagisawa M (1998). “Orexins and orexin receptors: a family of hypothalamic neuropeptides and G protein-coupled receptors that regulate feeding behavior”. Cell 92 (4): 573–85.

5. Parker I. The Big Sleep. The New Yorker. December 9, 2013. http://www.newyorker.com/reporting/2013/12/09/131209fa_fact_parker