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.