Bring up evidence-based medicine to a clinician—doctor, nurse, or any other caregiving professional—and you are apt to have a lively discussion of the merits, current limitations, and political elements of contemporary healthcare.
Broach the same subject with the average patient, and you are as likely as not to get little more than a blank stare in response.
America’s healthcare system is not hurting for better technology, procedures, or clinical knowledge. What really squeezes the system and limits its effectiveness is the widespread lack of health literacy.
What are we talking about?
Best practices, by and large, are a numbers game, not a guarantee. Patients that grasp this are better equipped to make decisions, collaborate with clinicians, and generally be active participants in their own care. This is the essence of patient engagement: getting patients to follow instructions, ask questions, self-regulate, and support their care team.
None of this is possible if patients don’t understand the conversation about their care, the instructions they are supposed to follow, or the meaning of any of the tools being thrown at them to boost engagement metrics. The same goes for personalized medicine, the much-hyped future of all care that takes medicine right down to the individual genetics of each patient. Even this high-tech ideal relies on a more robust doctor-patient partnership, which in turn must begin with a more health literate patient.
Before we can have personalized medicine, we need patients to be present, engaged, and literate on their healthcare. When we have such a partnership, then we can start to personalize care in a way that doesn’t commoditize patients and their data the way Facebook and Google have done.
Fortunes are already being made by selling technology as the gateway to patient engagement; technology itself, however, is a double-edged sword.
A solid health literacy foundation could very well enable patients to grasp what distinguishes a best practice from the tantalizing pseudo-science of medical “woo” that has had enjoyed such incredible popularity thanks in part to the internet. The internet is not the antithesis of health literacy or constructive patient engagement. Going forward, digital technology centered around connectivity is likely to be the foundation for a majority of patient encounters and next-generation healthcare.
Younger, digital native patients expecting a more seamless, integrated experience when they go to the doctor or to the hospital are already beginning to drive adoption, investment, and innovation in this area. Trouble is, this techno-evolution doesn’t inherently support health literacy development.
Hollywood (and the magnifier that is digital media) can be both an ally and antagonist to greater health literacy. One high-profile case of medical misrepresentation can undo years of progress in science, understanding, and public education. Consider what Julia Roberts’ character in Steel Magnolias did for diabetes.
More than medication
Then again, thought leaders are working to do for healthcare what The Big Short did for America’s banking system, crowdfunding a film project that takes aim at the entire system. This is particularly heartening because health literacy today isn’t even just about health topics—to be effective, it needs to incorporate knowledge of the healthcare system, from insurance and billing to access and institutions.
Even the most health-conscious patients may still be at a loss to navigate a system they don’t understand—and it is clear that, overwhelmingly, patients (and plenty of caregivers) don’t really understand the way American healthcare works. Insurers, physicians, hospital systems, provider networks, policymakers—they all stand to gain by putting health literacy first. Insurers have every reason to charge patients more for poorer health management, and accountability is much easier to measure. Wearables alone can give at least some idea of activity levels, and in the near future, diet.
No free market approach can work when consumers don’t know how to shop, or what they are shopping for.
Going to the source
True health management starts and stops with patients—visits to the doctor happen only in between. It is troubling, therefore, to see how much pressure they escape as regulations and incentives pile up on the clinical side. Meaningful Use, pay-for-performance (as opposed to fee for service), ACO systems—everything aims at providers to affect the whole system. Transforming the system necessarily involves a new, comprehensive approach to patient education.
Just as clinicians are obliged to pursue continuing education, patients, too, need lifelong learning incorporated into their care. That means more emphasis on health subjects from grade school all the way up through primary care visits, every point of contact with insurance, and every conversation with a provider. There is no single point of accountability that can be leveraged to make this change; just as healthcare is a team effort along a continuum of care, so is patient education a collective process.
By extension, there is no one policy or initiative that can be a panacea for changing the trends on health literacy. As long as it manages to stay in the sights of our technological advancement, institutional growth, medical training, and efforts to expand access, we can keep it at the center of all our efforts to push healthcare in America forward.
Here are some books you may enjoy (The TDWI Team)