Disparities

Because they look dissimilar they are pronounced inferior.

Diverse, or disparate, that is the question. We prize the former, we loathe the latter, and yet they mean much the same thing. They mean different, dissimilar, distinct and distinctive: self-contained, unlike others, “not me,” us versus them. Diversity in a biological or sociological sense is a presumed source of strength. Disparities are signs of weakness or vulnerability. Regarding health in particular, disparities are cumulative indicators of morbidity and premature death. Most of that preventable or avoidable or treatable in theory; in reality, not so much. Why, and how is that?

I think it’s because diversity connotes a balance or blend of differences that yield an efficient system and process. In biology, for example, the microbiome within our bodies is very large and diverse, such that most of our cells are not even human; yet contained by the body as they are, they boost resiliency and vitality. Our existence and authenticity as Homo sapiens depend on the active participation of other organisms within and upon and around us. They are not us, they are different from us, yet they make us whole and keep us well.

Disparities do not make us whole. Just the opposite: disparities fracture and fragment, exaggerate our differences, hobble our ability and desire to function competently, turn our distinctions into antipathies, belittle or marginalize some of us for the benefit of others. In biology again, disparities manifest in racial characteristics that are just plain human, as human as anything else in the body, yet because they look dissimilar they are pronounced inferior.

Diversity builds us up as individuals (healthier, wiser, more competent, nicer) and as a species (social, adaptable, empathic, industrious). Disparities push us down and tear us apart by making individuals alienated, suspicious, stupid, aggressive towards others who are different; while clinging manically to rogues who seem more like ourselves.

Back to the question: Why do we prize diversity? Because diversity is natural; it is evolutionary; it is progressive; it is liberating; it affirms the bounty of life. Diversity is self embracing non self and engaging rather than exploiting the differences. The engine of diversity is Eros, or love. We are diverse when we love our neighbors as ourselves though they are not ourselves, they are different. Why do we loathe disparities? Because disparities are unnatural, arbitrary, ugly, toxic, malevolent, egotistic, vicious, futile, unnecessary. The drivers of all disparities are pride and greed.

Yet health disparities are so pervasive that they practically run the healthcare industry and the government that regulates it. Health disparities are the twisted distribution of health outcomes resulting from social rather than biological determinants. The obvious determinants are race, ethnicity, income, community, food insecurity, risky behavior, local medical incompetence and malfeasance, medication noncompliance. Far more damaging determinants are health illiteracy and learned helplessness: the inability of people to understand their bodies enough to care for them without medical supervision, and their unwillingness to try. In other words, the origins of health disparities are mental: ignorance, foolishness, bias, resistance to change, irresponsibility. The things that Humaginarium was born to mitigate.

Such social determinants are not baked into Homo sapiens; they are concocted by policymaking and economic interests. Why? Because they cost some of us nothing to ignore and they support a $3+ trillion industry that makes a good profit from sickness. Literally. Do not for a moment believe that the business models of healthcare promote health, because they don’t. They promote treatment, which unfortunately has such a random correlation with health that I doubt it is statistically meaningful for most of the population. Treatment correlates closely with economic measures, not with health outcomes. Our civic response to Covid-19 demonstrates this, but my point about disparities doesn’t need a crisis to stick. All it requires is individual experience of routine medicine in normal times.

Diversity is good, but we lack it because we are too damned prejudiced and self-interested to promote it. Disparities are bad, but we tolerate them because they reinforce injustice that benefits some individuals at the expense of others. What to do?

Whether ’tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles
And by opposing end them.

We are all swimming in that sea of troubles these days, some wearing life vests, some clinging to soggy boards, others floundering and going under. Taking up arms is a tough call for people who shoulder the most severe disparities. Most of them have little leisure or means for nobility in the mind.

Yet there is something awe-inspiring about that refrain, “No Justice, No Peace,” echoing in the streets and perhaps one day breaking down the doors of our clinics. Each of us in their own way, we must “end the heart-ache and the thousand natural shocks that flesh is heir to.” We can start by hallowing diversity rather than giving it lazy, mindless lip service, and ending disparities even if there is no investment-grade case for doing so.

Acumen

88% of American adults have reading skills equal or inferior to a child in middle school.

Literacy is the ability to read a vernacular. In the United States, about 18% of all adults are functionally illiterate. Either they can’t read at all, or their reading skills are less than basic: at best, equivalent to a competent third grader’s, 8-9 years old.

About 34% of American adults are basically literate. They can glean simple information from printed matter, but not make much use of it. At best, their reading skills are equivalent to a competent fifth grader’s, 10-11 years old.

About 36% of American adults are functionally literate. They can understand the meaning of straightforward text, but can’t parse or interpret it for implications and consequences. They have workaday reading skills, at best equivalent to a competent eighth grader’s, 13-14 years old.

All of that said, about 88% of American adults have reading skills equal or inferior to a child in middle school. Leaving only about 12% with purported “adult” literacy. Hold on, that’s actually an overstatement.

About 10% of adult Americans have adolescent literacy: reading skills equivalent to a competent tenth grader’s, 15-16 years old. Only a tiny 2% of all Americans have genuine adult literacy, the kind of reading comprehension that is mandatory for higher education and professional endeavor.

I had to give this context in order to introduce the topic of health literacy: an ability to read the vernacular of health care. The vernacular of health care is the text printed on forms, handouts and signage in clinical and pharmaceutical settings. It’s the text in books, articles and websites with health-related subject matter. Most health-related subject matter is applied or theoretical science. For example, it’s not about how to use soap (function); it’s about why soap produces better health outcomes (cognition).

The vernacular of health care varies quite a lot — from papers in the New England Journal of Medicine at the high end to printouts stapled to prescriptions at Walgreens — but all of it has this in common: it is practically unreadable and therefore useless for around 98% of American adults.

When Humaginarium announced, at its founding, that it will promote health literacy at scale, it rose to an enormous challenge that generally goes unnoticed, despite its gargantuan economic costs and impact on health disparities. We had to come up with a way to promote adult health literacy across a population that overwhelming lacks adult literacy of any kind. Now we have done that. We have invented a way that should work well for the first 87 million adults who use it; and we are preparing to build and test a prototype of this amazing innovation. That is kind of exciting.

However our research also exposed some deflating limits of health literacy. Even if and when we demonstrate and prove exquisite technology that increases the health literacy of most American adults, will their newfound literacy effectively ameliorate health disparities among them? Put another way, will mastery of the vernacular of health care actually make most people healthier, happier and more secure?

The answer is no, it will not. The best outcome we (or anybody) can expect from adult health literacy is more participative medicine. By that I mean better quality of communication between patients and their clinicians and makers of medicines. That’s a pretty good outcome, but not good enough. It is not the game changer we seek.

To finish the job we started, we also have to promote health acumen. That is the key to medical self-efficacy. Acumen is an ability not just to read, but to exercise good judgement; to make healthy choices in the absence of external direction and authority; to possess keenness and depth of perception when observing what is obvious to any inquiring mind; to discern what is going on below the skin and the palpable symptoms in a body; and to discriminate between meaningful and false signals from blood, flesh and bones.

Understood thus, health literacy is no guarantor of health acumen. It’s just a prerequisite. Because without mastery of the vernacular of health care, critical thinking that fosters acumen must be so profoundly impaired that it’s practically impossible. People cannot exercise good judgement if they are grossly ignorant of the relevant science; and biomedicine is not the stuff of middle school.

This is why I no longer say that Humaginarium promotes health literacy at scale. Instead I say that Humaginarium promotes health literacy and health acumen at scale. Not just for the 2% who already have their linguistic ducks in a row, but for the 98% whose ducks are paddling aimlessly around the pond while the sky over their heads darkens; those who foolishly hope or expect the health care industry to make healthy choices for rather than with them. To have health acumen is to believe that “I will figure this out; I will decide; and I will make my decisions stick, come hell or high water.”

Like Gandalf, Humaginarium has found a way. We found our version of Thrór’s Map and a key that opens the door in the Lonely Mountain of health care. Beyond that adamantine door, Smaug is dreaming atop a gleaming horde of stolen treasure. After a long and perilous journey, Humaginarium is coming for him.