Scientific

What one observes and what one imagines are mutually reinforcing.

Last week I poured a dollop of health literacy and a gobbet of health acumen into a shaker, and shook. Shaken thus (not stirred), they yield a heady cocktail known as self-determination. Why does that matter? Because the self is the most instrumental determinant of health outcomes. Literacy and acumen each by itself informs and weighs; together they empower.

I always call this cocktail “scientific entertainment,” an oxymoron that evokes what Humaginarium is about. We know what entertainment is: it is art; it is artifice that tells the truth and gives pleasure; it is amusement, enjoyment, fun that replaces what actually is with what might or should be in a world of our own making. Everybody knows what entertainment is because everybody needs it, wants it, pays for and uses it; goes out of their way to get it and feels anxious or frustrated when they don’t get enough. But what about scientific? Most of us use that word without knowing (or maybe even caring) what it means.

Science is knowledge; or more precisely systematized knowledge; or more precisely still, systematized knowledge that results from observation and investigation, and that is consistent with evidence. That last bit is the main difference between science and art. Both generate knowledge, but science is empirical while art is philosophical. No big deal. Many people believe that one is more valuable, practical, truthful, influential than the other, but they are wrong. Not only are science and art equal in importance, but each is incomplete and hobbled without the other. Art and science together are another heady cocktail whose parts may also be enjoyed separately, but why on earth would you?

The usual answer is, because science is hard whereas art is easy. Science is technical whereas art is creative. Science is boring whereas art is exciting. Scientific insight resists and eludes discovery and application, whereas artistic insight just lies there waiting to be apprehended, and is useless. All of these contradistinctions are drivel: they just aren’t true. Yet we organize many civilized endeavors, including health promotion, according to our beliefs in them.

I say “scientific entertainment” to prevent the two concepts from coming apart at Humaginarium. My oxymoron is a frank declaration that empiricism and philosophy are not, or should not be, distinguishable. I push this to the farthest extreme by dovetailing the most erudite of all sciences (biomedicine) with the silliest of all arts (fantasy). For Humaginarium, when it comes to health and well-being, what one observes and what one imagines are mutually reinforcing. Always! I am, therefore I think; I think, therefore I am. (Descartes got it half right.)

You will not find health acumen mentioned by the World Health Organization or the Centers for Disease Control and Prevention in their campaigns of health promotion. Only health literacy. The reason for that is probably because literacy is scientific; acumen is fluff. Consequently, because of this scientific bias, their institutional essays on health literacy are generally unsatisfactory, futile, trivial, beside the point. Humaginarium hopes to improve the balance.

Nor will you find WHO and CDC tipping their hats to the arts as they bow to science, except on very rare occasions. Artists have no seats at the table of health promotion; all of the permanent seats are occupied by scientists and clinicians. Is that right and proper? No, it isn’t; it is disastrous. At Humaginarium we hope to do something about that as well.

Our hopes are not effusions of a company that has a dissociative identity disorder. Humaginarium is not trying to meld things that don’t belong together. We are not trying to be clever by getting funky with subject matter that is essentially technical. We are merely doing what needs to be done to break the cognitive chains that hold down the 98% whom I mentioned last week. Science can’t do it alone.

Or to put it a different way, we are making a heady new cocktail that is greater — far greater — than the sum of its parts. Shaken thus (not stirred).

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.

Market

Healthcare treats health literacy as noise on its uneconomical fringes.

The mission of Humaginarium is health promotion. Yet strangely, there’s no market for health promotion. People aren’t buying it.

According to the World Health Organization (WHO), “Health promotion enables people to increase control over their own health. It covers a wide range of social and environmental interventions that are designed to benefit and protect individual people’s health and quality of life by addressing and preventing the root causes of ill health, not just focusing on treatment and cure.”

The emphasis here is on “individual people,” meaning consumers or patients – those I call regular folks. They are the targets and beneficiaries of health promotion.

The emphasis is also on “control,” meaning medical self-efficacy among those selfsame individuals. Health promotion is not supposed to benefit the healthcare or wellness industries that sell services to consumers. It benefits the people who have or risk illness.

The specific pillar of health promotion that concerns Humaginarium is health literacy. WHO says that health literacy enables people to “acquire the knowledge, skills and information to make healthy choices, for example about the food they eat and healthcare services that they need. They need to have opportunities to make those choices.”

Thus health literacy is not knowledge or skill or behavior, and certainly not health outcomes. It’s merely the ability of regular folks to learn, in order to make sense and use of their own choices.

In effect health literacy is a competence rather than an outcome, and it’s one that never comes naturally. It must be learned, and there’s the rub. Most folks may be educated, but few have even the most basic health literacy. They didn’t learn it in school. They didn’t learn it in clinic. They didn’t learn it from friends and family. They didn’t learn it by surfing the Internet. Why is that?

Well, I know of two reasons. One is biology as a second language. We must dismiss the advertising we’ve seen and remember that healthy choices are not consumer packaged goods in the supermarket. They are expressions and perceptions that employ the semantics of science. Healthy choices are really hard! The second reason is the information itself: the intelligibility and utility and consequences of choices even after you know what the words mean.

For example, you probably know the word bacteria, but what good is that without knowing how certain pathogenic bacteria got into your mouth and throat and lungs; and how they managed to thrive; and what they’re doing there; and how your body is coping with them? You cannot gain health literacy – you cannot become an individual who exercises control – without some level of scientific acumen that makes you aware of things like this going on in your body.

Mundane health promotion doesn’t make you aware in that way. It typically doesn’t increase your ability to understand and use scientific information. That privilege is reserved for denizens of the laboratory and clinic. Consumers get to pay the salaries of those professionals, with taxes and co-pays and health insurance. That’s mostly where their role ends, for now.

Taking a new approach, Humaginarium promotes health literacy by helping folks experience and play with science of the human body, so they can discover their own truth and make meaning personal. Few health promoters have inspired regular folks to believe they can do that. Maybe Humaginarium has found a way.

However there’s a problem. Remember what I said about the market for health promotion: there isn’t one. Humaginarium can’t go selling health literacy where nobody is buying it. We’ll have to sell it where customers are likely to show up and pay.

That isn’t in the healthcare industry, which treats health literacy as noise on its fringes. Healthcare rarely addresses or prevents the root causes of ill health, but focuses on treatment and cure. That’s understandable; it’s how companies create shareholder value. As a healthcare executive once said to me: “We’re not interested in wellness; we make money from illness.”

Thus the fringes of healthcare are littered with low-budget crap like self-help books and infomercials. Humaginarium doesn’t like fringes; we want to be the center of attention. So we turn to entertainment, where there is a huge market of individuals seeking to exercise control: the market for commercial video games.

In the video game market we know we can render scientific health information visually and dramatically, without bewildering language. Not to teach but to inspire many individuals with the experience of discovering and controlling healthy choices. First in enjoyable, escapist fantasy chock full of risky adventure; then with the real and persistent challenges of their own body and life.

Scientific entertainment. Male Nude, with Arms Up-Stretched (1828-1830), by William Etty. Pictured with small polymorphic bacteria which cause pneumonia, genital and urinary infections in stressful situations like this one.

Vision

To master chronic illness with understanding and control

A funding application on the workbench prompted me for a “vision.” Oh that’s easy, I thought; I’ll write one while the kettle boils.

I sort of did that; and the next day, when I saw the turd I had created, I suddenly realized that I don’t know what a vision is. Actually that’s not true. I know what a personal vision is; and I know what a shared vision is; but I don’t really know what a corporate vision is.

That’s because corporations, in my nonlegal opinion, are not people; they are abstractions. They exist only when you’re using or talking about them, whereas a real human being, or a group of folks, just exists. So how can an abstraction have a vision?

Stumped and stymied by this weighty question, I did what everybody does these days instead of praying: I googled it. Lo and behold as usual, Google answered with delightful speed and precision (which rarely happens with my prayers). It linked me to an article from down under, the other side of the world, where day is night; an article that explains – not how an abstraction can have a vision – but what that vision should be like. It was now time to set aside philosophy and (re)write the damn vision of Humaginarium.

I normally don’t share external links in this blog, but because this one is particularly useful and may save other entrepreneurs some time, I am inserting it here. You may read it if you wish; if you do, it may help you answer the question at the bottom of this page.

So then, drum roll please. The vision of Humaginarium is: Popular video game entertainment that inspires regular folks to master chronic illness.

Romantics like me expect visions to be exciting, even breathtaking, like Elon Musk making a crazy announcement or Steve Jobs throwing down the gauntlet. That comes from the notion that a vision statement is a coming attraction, but according to the experts down under, it is not. It’s not a call to arms, not an expedition to the Misty Mountains, not something you run up the flagpole and salute. It’s humbler than that. A vision is a very, very short description of what will be different in the world when the work is done and the dream has come true.

Popular video game entertainment that inspires regular folks to master chronic illness. My vision statement is appropriately short and it does sound matter of fact. Nonetheless it’s aspirational. I shall explain.

The word “popular” in it means accessible, affordable, convenient, easy to use and much loved: different from all past and conventional health promotions. If Humaginarium makes health literacy cool, it will be f***ing amazing.

Video game entertainment” is our flagship product; not the only thing we make, but the main thing. Why? Because our addressable market of 100 million consumers who like video games and have a chronic illness may flock to Humaginarium if it’s really fun to play. A few hundred may come if it’s merely edifying.

Our work “inspires” by awakening ambition and self-determination. These conative attributes are supportive of self-efficacy (the pillar of our brand). I say “conative” with trepidation because, though the word is older than the English language and is just as meaningful as “cognitive” and “behavioral,” I have never uttered it in mixed company without being asked, “What’s that?” I’ll save you a trip to the dictionary with this handy definition of conation: the mental faculty of purpose, desire, or will to perform an action. Inspiring!

Regular folks” are the kinds of consumers we serve. I borrowed the phrase “regular folks” from Chris Anderson (the futurist and writer, not the TED founder). He uses it when referring to people who are not differentiated by affluence or education. Regular folks is pretty much everybody I meet who is not pretending to be somebody different.

These folks “master chronic illness” by means of understanding and asserting control over it – in our games and in their lives. The chronic illness may be one they have or one they risk; both kinds of threats are mitigated by health literacy that is generated by Humaginarium.

So what do you think. “Popular video game entertainment that inspires regular folks to master chronic illness.” Good enough?

Shameless

The mirror always lies.

Mirror, mirror in my hand, who’s the fairest in the land?” It depends who’s asking. If the Evil Queen asks, she’s usually the fairest. Anybody else – like you or me for example – fuhgeddaboudit! We look in the mirror but can’t see a body there. Instead there’s a body image: a placeholder for the real thing. Most folks find their own body image fascinating and true. Yet nobody else can see it, because it’s also unreal. Like Humaginarium minus the fun.

Basic body image is contrived self-awareness of personal beauty, or lack of it. It’s a mental model, a projection rather than a reflection, something like Peter Pan’s shadow. Body image is a creative reconstruction of the organismal self: physical, behavioral, visible, expressive. It’s everything that reflects sunlight in the real world, though it isn’t actually there.

Body image is superficial yet complicated, sometimes disturbing. We rarely see one without feelings of surprise and delight, or curiosity, or suspicion, embarrassment, even shame. When body image feels out of control, we try to master it with stuff – fashion, coiffure, cosmetics – that make the image look, well, more beautiful in the mirror than the body is in real life. At least we try. It gets expensive.

Folks have positive and negative body images that alternate, like having two of those wily Peter Pan shadows. The images switch on and off with moods, health conditions, social interactions; and they produce different, confusing outcomes. Positive yields satisfaction and acceptance of self. When our body image is positive, we’re like the Evil Queen when her Magic Mirror says, “You are the fairest!” – or at least fair enough, fuhgeddaboudit. Negative body image by comparison is stressful. It unleashes feelings of sadness, anger or alienation. “Snow White is now the fairest,” says the Magic Mirror unexpectedly to the Evil Queen. “You’re kind of a mess.”

Was the Magic Mirror body shaming the Evil Queen? The fairy tale doesn’t say, but yes, I think that’s what happened. The Evil Queen felt humiliated because her outward appearance was somehow, suddenly flawed though it hadn’t changed one iota. In a modern retelling of Snow White, the Evil Queen would not begin a criminal conspiracy to murder and cannibalize her rival. Instead she would enroll in a gym, reduce the size of her portions and meals, try a different hairstyle, consult a plastic surgeon, move her shopping from Bloomingdale’s to Bergdorf Goodman.

But none of that would matter. Why? Because it isn’t true that the Magic Mirror never lies. The mirror always lies! False positives and false negatives abound, making folks complacent or anxious but rarely indifferent and often inauthentic. How they look determines how they feel; and how they feel about themselves may damage their selfsame body – the one that is invisible in the mirror but is the only incontestably real thing about them. Agonizing body dysmorphic disorders may start when the mirror is mistaken for a magician.

Humaginarium also performs magic, but not with mirrors. Rather than judging relative body shape or size, rather than identifying flaws in a body that have to be masked or fixed, rather than exaggerating the importance of irregular features, it flatly states that the human body is a miracle. To be clear and unequivocal: every human body is a living, breathing, sentient miracle; not because of how it looks, but how it works and acts.

Perceiving and appreciating the intrinsic beauty of this miracle yields something far more satisfying than positive body image. It yields a positive body, full stop! That’s a good foundation for resilience, self-worth and self-determination that pursues and preserves health. It’s a good attitude to take to all those mirrors in the dressing room and bathroom: proud of your beauty, inside and out, and utterly shameless.

Biology as a Second Language

We understand the body about as well as we understand my first paragraph.

When the amygdala perceives sensory information from the thalamus to be threatening, it engages the paraventricular nucleus in the hypothalamus resulting in the stimulation of corticotropin-releasing hormone (CRH), which begins the stress hormone cascade. This hormone then stimulates the pituitary to release another hormone called adrenocorticotrophic hormone (ACTH). This hormone travels down to the adrenal cortex gland, which produces the stress hormone cortisol. Cortisol in turn will feedback to the hypothalamus and the pituitary.

I’m quoting above from a book named The Science of Stress. The authors explain to the general reader how the HPA axis responds to internal and environmental stressors of the human body. I bring this up here for two reasons.

First, the axis is implicated in metabolic syndrome and diabetes mellitus type 2, the subject of our prototype projects Diabetes Agonistes and Metabolic Genii. The HPA axis is a kind of tripwire: the cause of and the mechanism for incredible biological activity in our bodies: every body, every hour of every day. The axis keeps us healthy or makes us sick depending on forces that we, rather than it, control. If the axis didn’t work properly, with phenomenal speed and precision, we would suffer and even die. Yet most of us willfully undermine the axis with some of the behavior typical of our personalities.

Personality is a vague concept, but I think it’s fair to say that personality or self (ego, id, superego) is neither inherited nor determined by environment. It’s a product of the individual imagination – a creative projection of the mind – that tends to take the body for granted. “I think therefore I am.” Until – inevitably – the body breaks down and it’s hard to think straight. We choose to behave as we please, often dangerously, because we understand the body about as well as we understand my first paragraph; i.e. we’re clueless.

My second reason for quoting The Science of Stress is to make a point about health literacy. We know that literacy is the ability to write and read language. And in our society, basic literacy is purportedly equivalent to eighth-grade communication skills. In other words, to be nominally literate in America, in 2019, is to communicate like an adolescent.

That is why my first paragraph is a challenge for regular folks. It is written in English that a scientist or clinician, with abundant education, easily understands. It is not written in the English that the vast majority of their fellow Americans can even read, and none could ever write. For that reason, the meaning of the paragraph doesn’t exist for them. They can’t interpret or use it, and that’s a problem.

You could say those scientists and clinicians are certified BSL: biology as a second language. They’ve been trained to read and write the language of biology. Not for its own sake of course, but in order to use biology in their professions. The humanities majors among us, and the greater number who never got past high school, are literate in that adolescent way. We are not BSL certified. We can’t understand and use biology because it’s wrapped in esoterica.

Or can we? Of course we can’t teach BSL to the masses. We could however extricate biology from its language wrapper and render it in forms that regular folks can easily understand – and even enjoy. That’s what Humaginarium is doing with the biology of chronic illness. Making it animated and visual with symbols and pictorial narrative. Making it tangible so folks can touch it, play with it, fight with it, figure it out and master it. Not biology as a second language, but biology in a visual language of color and shape that folks are already fluent in, and capable of probing for meaning.

Now, some would say that regular folks cannot understand biology, not because they’re baffled by the language, but because biology is way too complicated. This may be why most promotions of health literacy avoid science like a plague and focus on behavioral adherence to rules. I’m betting those promoters are wrong. Based on my experience as a parent, a patient and an educator, there is nothing in or about biology that is beyond the capacity of an average adult to understand.

All those average adults are organisms at the top of the food chain. They are outcomes of billions of years of evolution. Their minds are the most wonderful things that nature has ever made. They are not stupid! They certainly have the capacity and the motivation to understand, interpret and use science to fight chronic illness. Only first, they have to take off the gloves, and we have to take off those bewildering, jargony wrappers.

Scientific entertainment. Dante and Virgil in Hell, by William-Adolphe Bouguereau; pictured with histology of the pituitary gland.

Psychoneuroimmunology

Producing outcomes without being a healthcare company.

Humaginarium is not a healthcare company. We’re unlike startups whose therapies heal or cure; also unlike those who manage medical service delivery. Nothing we do for patients requires access to medical records or histories; nothing we deliver to patients requires prescription, clinical control or reimbursement. In fact we rarely think of users as patients at all, but as regular folks.

Likewise Humaginarium doesn’t cater to providers, payers or suppliers of the healthcare industry. We don’t make things for them to buy or ask them to finance what we make for consumers. True, we are working to earn their versions of the Good Housekeeping Seal of approval, but not because it has monetary value. The effort to gain healthcare industry blessing will simply make us a better company.

All of the foregoing seems rather odd and uneconomical positioning for a health tech startup, but hopefully it’s rational. I’ll try to explain.

Humaginarium is an entertainment company. We develop video games and ancillary apps that amuse and inform. We use our programs to educate and empower people; not about everything, of course, but about their bodies and health; in particular about chronic illness they have or risk getting. Why? So they themselves can actually do something about it!

The foregoing category description rests on four functional pillars known as health promotion, health literacy, health education, and health equity. With a difference. Most programming within those pillars is behaviorist. It’s about conditioning: what, how and when to do things in order to become healthier. It’s rarely about learning: why something is and why it can be different.

Humaginarium is all about that why. As artists and educators we know there is only a dotted line between understanding and making a difference in real life. Our project turns those dots into a solid line with an arrow pointing to personal empowerment.

Yet as a high-tech artist and educator, am I certain that Humaginarium won’t heal or cure? I’m really not sure of that, so I don’t claim that it will; but I think it’s possible. Moreover likely.

I say this because I believe, from study and experience, in causal connections between mind and body; between mental and physical. The clinical term for such connections is psychoneuroimmunology (PNI). Everybody experiences PNI throughout their lives, practically every day and certainly when enjoying great entertainment, but science is only beginning to recognize and explain it. Clinicians by and large don’t have a clue. But it’s real.

A palpable example of PNI is the placebo effect, by which perceptions and beliefs improve health outcomes. Peer-reviewed research has proven (beyond any reasonable doubt) that the way people think and feel about themselves and their environment alters the biochemistry of their bodies. In plain English, our state of mind can actually make us well or sick. Everybody knows that, but why is it?

“Theorists propose that stressful events trigger cognitive and affective responses which, in turn, induce sympathetic nervous system and endocrine changes, and these ultimately impair immune function.” Did you get that? So for example, job insecurity or marital difficulty can, and often does, make people literally frail, vulnerable and symptomatic.

But what are job insecurity and marital difficulty? They are types of stress produced by the same thing: a lack of control. The same kind of stress that occurs with chronic illness. You have it, you don’t understand it, you can’t predict it, you can’t avoid it. It feels like a bewildering constant threat, like an asteroid heading towards your personal planet.

As such chronic illness is a self-perpetuating condition. The more fearful and anxious and angry the patient gets, the worse the disease may become. That’s fact, not fiction.

Humaginarium answers that fact with fiction. Literally, with fantasy in which users can face and understand and oppose and overcome illness in their minds. Fantasy of this kind is not merely an escape from reality, it’s an engine for belief in oneself; belief that “I am the master of my fate.”

When discussing PNI in the context of his long medical career, Sherwin Nuland wrote, “The question that remains is how these three major networks – the nervous system, the endocrine system, and the immunologic system – interact and, how, by understanding these interactions in precise quantitative terms, we can learn to predict and control them.”

That question is for scientists including positive psychologists, but not for artists and educators like me. We already know PNI works, though we can’t yet explain the molecular and cellular dynamics. If it works, we want to use it right now, not after decades of clinical trials, for the benefit of folks who have or risk getting a miserable chronic illness.

That is what Humaginarium is doing, and that is why I expect to produce meaningful outcomes without being a healthcare company.