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.

Literacy

Caring for a human body requires diligence, a force that is powered by health literacy.

My website says “Humaginarium is a systematic and evidence-based way to increase health literacy.” Let’s slow that down for a closer look.

For me at least, all literacy is a situated competency. There are no universal definitions and standards. Instead literacy is a personal, differentiated and evolving attribute. Yet somehow it always encompasses the same four generative acts: recognizing information, understanding it, relating it, and using it. If folks can reliably do these four things appropriate to their circumstances, they’re literate though maybe – probably – in dissimilar ways.

Recognizing information is knowing what something is. We naturally recognize information when encountering the source of it. Understanding is discovering and pondering the meaning of information. For example understanding why Ingres spent decades painting The Source (shown at the bottom of this post) in his unique way; and understanding why it is perfectly beautiful like that. Relating is assigning context to information so that it fits functionally or imaginatively into one’s world view. I related (and distorted) The Source by inserting a concocted cellular view of water, in order to reveal dangerous bacteria supposedly living in it. Using is working with information. My job with Ingres was to bridge an aesthetic divide between art and science. I tried to embody “scientific entertainment” – and also have fun (respectfully) with a great work of art.

Since I haven’t mentioned reading so far, I’ll pause now for a confession. I trained and practiced as a professor of English. Before technology barged into my life I taught college students how to learn from the literature and history they read. This was my vocation: increasing literacy by means of text. To this day I enjoy and learn more from reading than anything else I do, yet I don’t feel that literacy is fundamentally about scanning text. Reading is only one way to recognize information, often not the best way, and certainly not the way that Humaginarium promotes health literacy.

My notion of health literacy aligns with the four-part model of recognize, understand, relate, and use. Health literacy is all of that, only situated in health. Sounds pretty straightforward, but it isn’t.

First there’s the wrinkle of “health.” By that I mean the condition of a human body, the physical thing one calls “my life.” Health is neither illness nor wellness, diagnosis nor treatment, scheduling nor adhering. Health is the sum total of a human body and health literacy is a person’s ability to recognize, understand, relate, and use information concerning the body.

Next there’s the wrinkle of information. Information about the human body is extremely hard to take in because most of it is hidden in layered systems so complex and mysterious that they’re nothing less than magical. I’m using that term literally. Our living bodies are miraculous no matter what condition they’re in. They’re just very hard to make sense of.

There are more wrinkles with understanding, relating and using information about the body. Few regular folks ever even consider most of that information; they can’t understand the scientific and medical rhetoric used to express it, and they have little or no idea how to use it. Let’s be candid: for most folks, using information about the body is limited to consumption, procreation and labor – and most of that can be done well enough without health literacy.

Then why bother with it? Well, I think health literacy enhances acceptance of what the human body is, how it works, what it needs and why it’s in each person’s practical self-interest to care – with gobs of curiosity and courage. Caring for a human body requires diligence, a force that is powered by health literacy.

As health literacy increases, so does medical efficacy and the capacity for self-care. Those are two horsemen of a long-awaited apocalypse that may bring a failing health care industry to its knobby knees and replace it with the best health care possible. The kind that every individual with a chronic illness, regardless of educational or socioeconomic situation, constructs for themselves. Those are the folks who may benefit most from Humaginarium.

Scientific Entertainment. Variation on The Source (1856) by Jean-Auguste-Dominique Ingres. Pictured with Vibrio vulnificus, a type of waterborne, flesh-eating bacteria.

Contests

Corporate stakeholders like shiny new toys.

Soon after I joined the MATTER Healthcare Incubator in October, three partner organizations announced contests. None were a good fit for Humaginarium but I entered them anyway. Why? To learn more about the needs of corporate stakeholders; stretch my universal value proposition to the limit; practice my nascent pitch; and assess the competition. It was fun actually and I gained a few insights.

The partner organizations were Novo Nordisk (supplier), Advocate Aurora (provider), and Blue Cross Blue Shield (payer). Each called for innovations that serve a special interest:

  • The supplier wants to improve the treatment of diabetes
  • The provider wants to improve the quality of primary care
  • The payer wants to improve health equity in the community

Each contest attracted about 70 submissions from around the United States. I was surprised by the number and distribution because the prize in each contest was just a small amount of money. More than money though, the partners promised to commit human resources to the winners in order to advance their ideas to the next level.

As far as I can tell, I’m the only contestant who proposed a solution involving health education and literacy. Among the finalists, all of the others pitched technology that collects or generates data from patients. The data theoretically get used by clinicians to increase the speed and certainty of treatment.

The bleeding edge of these innovations is data analytics. “In God we trust, all others bring data.” Some contestants also preached the gospel of artificial intelligence. They coupled data analytics with expert systems in order to make their apps perform medical diagnosis and recommend treatments. Some contestants further broadened their scope by aggregating third-party technology into their architecture. So for example, after a patient enters a description of symptoms, the app crunches a universe of medical records and research to suggest a diagnosis and course of treatment. Assuming that you, as the patient, are sufficiently alarmed by that point because the signs point to cancer (like what often happens on WebMD), the app schedules an appointment with your doctor and calls a Lyft to get you there. You lose no time before experiencing the full curative force of our marvelous health care system. Providers capture more revenue from you, who would otherwise be oblivious to your condition; and they spend less time treating you because a lot of your health care has magically become self-serve.

I think all of the final pitches fit under a rubric of “connected health,” though there’s still a lot of variation. This overall pattern reinforced my perception that connected health is “hot” and shouldn’t be ignored in the design of Humaginarium. AI is likewise hot, but that makes me a little nervous because the science of AI is many years away from making life or death decisions about health, at least when it comes to mine. It’s a safer bet for pizza delivery. There’s a slight chance that data analytics and artificial intelligence in health care are digital lingo for “smoke and mirrors.” I doubt it, but it’s possible.

Anyway my takeaways from all three contests are:

  • Corporate stakeholders like shiny new toys
  • The top innovations solve provider problems, not patient problems
  • They want to automate health care to the extent possible
  • That pairs nicely with increasing capacity and efficiency
  • Patients themselves are objects rather than subjects of innovation
  • Self-care is a euphemism for medication adherence

Most of the finalists were pretty far along on their journey, with fully developed products, teams, pilots, partners, and customers. Thus their innovations were low risk because they were seeking support for execution rather than ideation. They have traction.

I was delighted to be the only contestant promoting health literacy, delivering health education that empowers regular folks to think like a consumer and not just behave like a patient. This brought to mind the Jungian gallery of archetypes. My brand archetype of sage is uncontested at least in these contests. The question remains though, can a sage attract investments and make boatloads of money? We shall see.