Those Colored Tiles Gotta’ Go

Four out of five Americans is ill-equipped to navigate our health system. It’s the biggest challenge we face as legislators frame what’s next.

Knowing how to choose doctors and hospitals based on valid metrics, knowing how to compare an insurance plan’s coverage and its financial risks, knowing how to know what a drug’s side effects might mean, knowing how to search the web for treatments and avoid fake news, and knowing what laws about healthcare mean escape the majority of us—rich and poor, young and old, conservative and progressive, and so on.

The facts are these:

  • 18% of adults are considered “health literate” vs 17% who are profoundly health illiterate and 65% somewhat illiterate (2016 iTriage survey of 1000 adults commissioned by Aetna ). 
  • 56% of adults (the Content and Compliant, Casual and Cautious segments) are not inclined to educate themselves, a number that’s decreased only slightly from 59% since 2008 when Deloitte began its annual surveys (Deloitte Center for Health Solutions 2015 Survey of Health Consumers).
  • Consumers believe the health system is too complicated to understand and feel ill-prepared to navigate it themselves (Seven Core Beliefs of Healthcare Consumers, Agency for Healthcare Research and Quality).
  • The cost of health illiteracy is up to $520 billion annually—almost double the federal government’s contribution to state Medicaid programs and equivalent to the U.S. budget for defense (“Low Health Literacy: Implications for Health Policy” by Rosenblum et al estimate that health illiteracy costs 7-17% of health spending).

Per the literature, populations least likely to be health literate are older adults, racial and ethnic minorities, people with less than a high school degree or GED certificate, people with low income levels, non-native speakers of English, and people with compromised health status. Education, language, culture, access to resources, and age are all factors that affect a person's health literacy skills. But the problem is pervasive.

Thus, ‘quality of care’ to most means ample parking, affable service and avoidance of a noticeable bad outcome, not precise accuracy of diagnosis, appropriateness of treatment and achievement of optimal outcomes. Thus, insurance selection is about out of pocket costs for premiums, co-pays and deductibles and which physicians are in a plan and not benefits design, coverage criteria, the solvency of the issuer, denial track record and financial risks overall. Thus, opinions about health reform, and the Affordable Care Act (ACA), are unchanged since the fall of 2009, when one side framed it as a means for expanding insurance coverage and the other called it unwanted government run healthcare (Kaiser Tracking Polls).

As the GOP sets forth its replacement for the ACA, and as Democrats launch their indignation campaign, might both agree that increasing public education is job one for transforming the health system? Per the Institute of Medicine, low levels of health literacy are associated with poor outcomes, higher hospitalization, higher emergency room use, unnecessary utilization of tests and procedures and unnecessary costs. It would seem statesmanlike if the sides could agree it’s an issue and do something about it.

Notably, many elements Paul Ryan’s “Better Way’ plan depend on an informed and equipped public including expanded use of health savings accounts, the purchase of insurance across state lines, employee wellness program options and transitioning Medicare to a premium support program so seniors can choose private plans among many. The success of the GOP strategy depends on individuals who are able to make choices about their own costs and care.

Likewise, for Democrats, the healthiness of populations, especially those lacking insurance coverage and those unable to afford the system, correlates to more informed decisions about their lifestyle choices, awareness of programs where high quality care care is accessible and alternatives to crowded emergency rooms for routine care.

Employers get it.  They’re pushing their employees into high deductible health plans at a record pace, pushing employee deductibles up 49% to $1478 since 2011 (Kaiser/HRET). They’re investing in wellness programs and educating their employees about outcomes, value, safety and affordability. But employer-sponsored coverage covers only half our population. The rest depend on public programs (Medicaid, Medicare, military health, CHIP and others), purchase services and insurance on their own, or simply go without and take their chances.

Creating a health system in which citizens have more skin in the game makes sense, especially if ideologically its preferred over a government-run single payer system. Both are risky. Single-payer systems like those in Canada, France, Switzerland, Netherland and the UK are unique but have common attributes: levels of hospitalization, surgeries et al are similar, they have the latest drugs and technologies, they cost less than the U.S., they invest more in primary and preventive health and control expenditures for specialty care. Their citizens like their systems more than U.S. because it’s simple and accessible, with no out of pocket costs but higher taxes. But these systems have limitations: specialists earn less, hospitals are older, end of life care is limited, and a government agency oversees standardization of care to assure it’s evidence-based and efficient. And inevitably, in each single payer system, a privately-run option emerges for those of higher means, serving 15-20% of their populace and bifurcating healthcare into a small system for the have’s and a big public system for the have-nots.

So, as we inaugurate Donald Trump as our nation’s 45th Chief Executive this Friday, and as Congress plows through Repeal and Replace maneuvers in coming weeks, it’s important that leaders adopt an informed, educated electorate as an act of bipartisanship.

Perhaps the 15 physician members of Congress could launch the effort with a bipartisan bill akin to the support given the 21st Century Cures Act last month.

Perhaps clinicians and hospitals could be compensated for educating their patients and communities and their effectiveness in this regard reported publicly.

Perhaps our foods and our drugs could be labeled in such a way as to make explicit their risks.

Perhaps we could harness the incredible skills of professional healthcare communicators—PR firms, advertising agencies, public health officials, hospitals and insurers—and launch a national campaign for health education and against fake news.

Perhaps we should consider simplifying Medicare, compressing its Parts A, B, C and D into something comprehensible. And for that matter, insurance in general.

Perhaps educators in primary, secondary and collegiate/trade schools could make room in their curricula and design classes and programs about how to navigate the health system—choose doctors and hospitals, understand treatment options, choose insurance and so on.

And perhaps we should address the problem of health system ignorance head on and admit it’s systemic and lethal.

I started my career at Erlanger Medical Center in Chattanooga 50 years ago, I recall the instruction at orientation: ‘to help patients get to the lab, or a clinic, just tell them to follow the color tiles on the floor. Otherwise, they get lost and they don’t understand anyway.’

We’re still treating public education about healthcare with colored tiles. Ignorance about how our health system operates, how to navigate it effectively and how to afford a household’s needs for care is a pandemic in our society. It’s not about bad people or political posturing: it’s about a flawed system that defaulted to colored tiles. Regardless of what becomes of Repeal and Replace, it’s got to’ change.

Paul