Literacies

Hey you, WHO, CDC, OECD: go stuff your endless texts!

There are many kinds of literacy. One that we all recognize is the ability to read and write in a native language. The average adult literacy, of that kind, in the United States, is utterly abysmal.

So bad, in fact, that health information should be written at no higher than an eighth-grade reading level (13-14 years old). That’s according to the American Medical Association, the National Institutes of Health, and the Centers for Disease Control and Prevention, as reported by Wylie Communications.

You might say: it is what it is, we do the best we can. But publishing health information, at the level of younger adolescents, is bound to reinforce health inequities. The reason for that? Even when information is dumbed-down thus, about half of all adults still won’t understand it. Not because they’re morons, of course, but because they lack reading skills.

This is a problem for anybody who produces health information, health education, or health promotion. Those are three pillars of self-determination, for controlling and improving health. They are meant to empower people. Problem is, most of what gets published under those headings is text. It must be read rather than watched, heard or experienced.

Ergo: no read, no learn; no learn, no improve.

There’s an additional problem for those who have proficient reading skills. Shown text that is written for juvenile eyes, they are more than likely to be bored. People tend to check out when boredom occurs. They don’t pay attention. They don’t engage. They don’t learn.

If we add the 50% of the adult population, who can’t understand the basic text of health information, with the 15% of the adult population that gets bored reading Golden Books, that leaves only 35% in the crosshairs of epitomic health information, health education and health promotion. No wonder the pillars are wobbly!

(Literate persons reading this may have noticed that health care is not listed as a pillar — for obvious reasons, to anybody who has received health care on a regular basis. It doesn’t empower through self-determination. Just the opposite, with rare exceptions. For better or worse, usually for worse, health care is a system of command and control.

However, I digress.)

The ability to read and write is a foundational literacy. It must be present in order for other literacies to flourish. Two others that are particularly important to Humaginarium are health literacy and scientific literacy.

According to the World Health Organization (WHO), health literacy is the ability of individuals to access, understand and use information in ways which promote and maintain good health.

According to the Organisation for Economic Co-operation and Development (OECD), scientific literacy is the ability of individuals to engage with science-related issues (including medicine), and with the ideas of science.

Each of these definitions, in their contexts, requires proficient foundational literacy to understand. The language is tortured. But for me they refer, somewhat allusively but inevitably, to reading skills: in one case, reading the rhetoric of medicine, in the other, reading the rhetoric of science.

Professionals spend decades in school and training, acquiring health or scientific literacy. And the 85% of adults in the United States, who have less than proficient reading skills? They don’t have a clue or a chance. They are sitting quietly, in the last row, waiting for the bell to ring.

That’s a problem that feels like an opportunity, at least to me.

Humaginarium has an opportunity to solve that problem. After noticing that the literatures of health information, health education and health promotion are banal and ridiculous for adults who are not morons (i.e. almost everybody), we cut a new path to empowerment. We obviously can’t develop the reading skills of folks with chronic illness, so instead we made reading optional. In fact, we made reading unnecessary. To be clear, people who come to our brand read nothing.

Instead of reading, they do what comes more naturally, no matter what level or kind of literacy they have attained. They get to:

  • Look at beautiful pictures
  • Play with amusing things
  • Crush thorny brain-teasers

In other words, they play video games. Our novel video games are health promotion in disguise.

Nobody will recognize the health promotion, because there’s no command-and-control text on the screen telling them what to think or do. Instead there are persuasive voices asking them to explore and act according to their own self-interest, their intimate wants and desires.

And for what? To win the game. To control the illness. To increase their share of well-being.

So hey, you, WHO, CDC, OECD: go stuff your scrolling pages of text already! Read my lips. The work needs to be about much more than information. It needs to be about empowerment!

Nurse Nancy, a Little Golden Book, now available from Amazon, and others since the 1950s

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.

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.