The Gravest Omission in US Healthcare

Part 1

Transformation of healthcare depends on continuously exploring the frontiers of healthcare knowledge and addressing gaps and barriers. Literacy alone is not enough. Health literacy is not enough. This is a call-to-action for harnessing the next essential frontier: healthcare experience literacy.

Reaching for the next frontier: healthcare experience literacy. Photo: Samuel Zeller via Unsplash

Children are intuitively inquisitive, natural learners, and creative problem solvers. They are taught incrementally, with efforts initially focused on basic developmental, linguistic, and socialization skills. Public school education builds on these fundamentals with reading, writing, mathematics, sciences, languages, history, and the arts.

The U.S. Department of Health and Human Services (HHS), Office for Disease Prevention and Health Promotion (ODPHP), has composed a multi-sector, strategic initiative, The National Action Plan to Improve Health Literacy, as a blueprint to serve as a guide towards a health literate nation. The National Health Education Standards (NHES) help to promote health literacy in public school health education curricula, defining and encouraging behaviors and skills that enhance the health of children from pre-kindergarten through grade 12.

Even with these 2 comprehensive, strategic imperatives, there is a gaping hole in public school education.

Sweet child, I’m sorry we have failed you. Photo: Annie Spratt via Unsplash

Has anyone noticed that we aren’t preparing children and young adults to be engaged members of the American healthcare system? The essentials of healthcare experience are not woven into the fabric of our educational system.

As a society, what are we doing to prepare the next generation of innovative thinkers, questioners of the status quo, informed decision makers, problem solvers, proactive members, navigators, coordinators, influencers, and shapers of the US healthcare system? As a society, we must take a bow and apologize to our children for our shortcomings and transform accordingly.

State of American Healthcare in 2017: Opaque Despair

Opaque despair. Photo: Tertia Van Rensburg via Unsplash

Healthcare is in a state of opaque despair. We spend more on healthcare than the majority of the countries in the world yet have some of the poorest outcomes worldwide. US life expectancy has dropped for the second year in a row. Patients have increased financial responsibility, with high deductible plans shifting significant out-of-pocket costs to individuals. Drug prices have risen dramatically. Costs of procedures and hospital admissions are staggering. There is little to no cost transparency.

Individuals are not sure how to navigate or coordinate care in the labyrinth known as our healthcare system. The majority of patients do not understand the basics of their insurance coverage. Words such as co-insurance, out-of-network, deductibles, and pre-certification are foreign vocabulary. People do not know why procedures are ordered or medications are prescribed. Many do not know how to obtain their medical records or fill out patient paperwork.

Governing policies are implemented with little understanding of the impact on patients and their loved ones daily lives. Developers are launching innovations without an understanding of the patient or clinician experience.

In a land of opportunities, our society has glaringly omitted to educate its people as to how to navigate the healthcare system, how to be an informed patient, how to be a proactive carepartner, and how to be a savvy member, and shaper of the healthcare system.

Doctors and nurses are suffering from burnout, with many physicians stating they find no joy in practicing medicine. Rates of physician suicide are a public health crisis. Administrative burden, electronic health record (EHR) responsibilities, and poor workflow processes hinder patient care.

The behemoth speaks clearly. Our healthcare system needs a phoenix rising moment now.

Healthcare Experience Literacy: A Public Health Unmet Need & Priority

The National Library of Medicine defines health literacy as the “degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions”.

Research conducted by the US Department of Education concluded that 12% of US English speaking adults have the health literacy required to make decisions about their care. The Agency for Healthcare Research and Quality (AHRQ) and the Institute of Medicine (IOM) have found that poor health literacy correlates negatively with the use of preventive services, management of chronic diseases, self-reported health, and carries negative psychological impact.

It is well known that poor health literacy has a negative impact on patient outcomes. Has anyone thought of the negative impact on a larger scale? How could a nation with such poor health literacy possibly design, develop, coordinate, and run a robust, seamless, safe, cost-effective, transparent healthcare system?

We can’t and we don’t. Case in point: the current state of the American healthcare system.

Interacting with healthcare? Welcome to mayhem. Photo: Peter Hershey via Unsplash

As a society, we are set up for failure by not ingraining the essentials of the healthcare experience into education. Benjamin Franklin hit the nail on the head: “By failing to prepare, you are preparing to fail.” Throughout preK-12 education:

· where are the courses on navigating the healthcare system from a patient or carepartners’ perspective?

· where do you learn the fundamentals of insurance coverage, such as differentiating between various plans, private plans vs. government based plans, deductibles, co-pays, and health savings accounts?

· where is the curriculum introducing one’ s rights as a patient?

· where do you learn how to appeal an insurance denial or hospital bill?

· where does one learn how to correctly fill out new patient forms or request medical records?

· where is the curricula that explains care coordination, how and why it should be done, and by who?

· where is the agenda that explains the paths patients need to take to finding mental health, addiction, or substance abuse counseling and support?

· where do young adults turn if their parents or legal guardians get sick?

· where do we learn how to discuss and plan for a good death?

· where is the course on completing an advanced directive, fully informed of all of the possibilities?

· where does a person learn about what a physician or nurse’s day is like?

· where is the overview of the typical pitfalls of engaging with the healthcare system?

· where does one learn to use social media for credible health research or support?

· where are the discussions on what to expect when being admitted as a patient to the hospital?

· where is the information on learning how to prepare for an annual well visit, vs. an appointment with a specialist, vs. a consultation for a second opinion on life altering diagnosis?

· where do social determinants of health get introduced and actively tackled for innovation?

· where do we learn about the importance of empathy as a critical leadership skill?

These questions don’t even scratch the surface of the current state of uncertainty and unpreparedness members of the US healthcare system encounter. There is more to health literacy than health education, positive prevention, encouragement of healthy behaviors, and violence reduction.

We must arm the next generation of children to be ready to mainstream into the labyrinth no matter what the interaction may be: as a patient, as an informed member, as a carepartner, as a savvy navigator and care coordination, as a disruptive innovator, as a government official, or any stakeholder of the healthcare ecosystem.

It is time to level the playing field and teach the fundamentals of healthcare experience literacy. How, you ask? Stay tuned for the answer in the next half of this 2 part series.

Time to level the playing field. Photo: Marek Novotny via Unsplash

Grace Cordovano, PhD is a professional oncology patient advocate and enhancer of the patient experience.

Follow her on Twitter at @GraceCordovano

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