If you’re reading this, then my new digs must truly be Boundless. How else could you explain the level of acceptance a place must have to let a gal who just joined two months ago share her very hot takes about “the state of healthcare”—our own industry—on the company blog?
In any case, I freely volunteer that the takes (hot or not) herein are mine and mine alone, and don’t reflect the official views of Boundless or anyone here. You know, unless they say otherwise.
Now, those things out of the way—look: I’m in my thirties, which is just long enough to know that no one is really an authority on something until they’ve done it for a long time. And by that, I mean two things: there’s no substitute for experience, and perspective and wisdom are earned.
That’s really one thing, if you think about it. But I digress.
I don’t claim to be an authority on healthcare. I haven’t been alive long enough. But, to adopt a phrase I will probably regret later: I am knowledgeable enough about healthcare—how it works; how to navigate it; who the players (and payers/payors) are; how policy, profit, and production shape access; how all of those things are felt by people at every juncture of this increasingly dysfunctional system—to be dangerous.
Philosophically, and on principle, I could write a very long essay defending what is, to me, a simple truth about healthcare: we (as a society) need to take care of everybody, able-bodied or otherwise. We certainly have the means to do so.
But, as I mentioned, I joined Boundless two months ago and volunteered to write a blog post about Health Literacy Month because:
1) I think all public discourse is valuable, and we talk about awareness months (and weeks, and days) specifically to (and forgive me for being obvious) increase awareness,
2) it just so happens that Health Literacy Month begins on International Day of Older Persons (October 1), and you know what?
3) I have a lot to say about both.
Before I worked in healthcare advertising, I worked (mostly) in academic research labs. There is a lexicon for every field (in and outside of research), to be sure, and with that, there are terms or turns of phrase that get under my skin whenever I see them. As a writer, I am keenly aware of how much weight words carry. I am also cognizant of how casual use (or misuse) can shape or reshape their meaning.
“Health literacy” is one of those phrases.
As Keith Tones began in his editorial in Health Education Research (ahem, 22 years ago), “Health promotion seems to have rediscovered health literacy.” He goes on to note that “literacy has a clear and unequivocal dictionary definition: ‘the ability to read and write, the ability to use language proficiently.’”1
Like mine, Tones’ issue is a semantic one—the meaning behind the phrase “health literacy” is off. At best, it’s patronizing (People are illiterate! They need educating!). At worst, it’s a deliberate attempt to reshape a narrative about our collective experience. I will try, for my mental health, to not assume the worst. Tones, however, did.
I will also concede that health literacy, as a topic, affects everyone, regardless of how it’s packaged or repackaged—and discuss its merits, we will.
But it’s hard, if not impossible, to disentangle the way the meaning of words or phrases evolves based on who predominantly uses them from the way their meaning is perceived by society at large. As Tones notes, when Scott Simonds first coined the phrase “health literacy” in the ‘70s, it was in support of the idea that health education should be part of the larger social policy and its inclusion could only help improve both the health and welfare of the people and the constraints of offering quality care with limited public health resources.2
I don’t think the way most of us think about things like Health Literacy Month is wildly different from Simonds’ initial intentions, but I do think we need to be clearer in our collective dialogue about which specific parts of healthcare aren’t working and what specifically needs to change, especially as these things pertain to the larger healthcare crisis.
What I mean is this: there will always be room for us (“patients”) to better educate ourselves. Healthcare—how we use it, what treatments are available—is constantly evolving, thus education will be a lifelong effort. It’s also important, as Simonds suggests, that we build health education into the larger societal ecosystem. The health curriculum in the United States has a lot of room for improvement, in particular.
But, for argument’s sake, let’s say we had this right. Say every person starting at a certain age knew enough about nutrition, what is in processed foods (and how those ingredients are derived), how to read research publications and spot study limitations, what symptoms to share with their doctors during appointments, and what questions to ask before procedures or taking medications. Equipped with all of this knowledge, would healthcare actually be more accessible?
Health literacy (or, as Tones points out, health education) is not just about improving awareness, it’s about making sure people have the opportunity to turn knowledge into action.
Beyond the immediate choices in the day-to-day, what good is education in medical deserts? How can health literacy help people afford care, find reliable transportation to and from appointments, or take time off work to go (especially in cases where people must travel to different states to see specialists)?
This, I think, is why Simonds argued that health education should be part and parcel of social policy.
Returning to Tones, he says: “This trend [the term and notion of ‘health literacy’] is not just an unnecessary exercise in re-branding, [it]… risks creating confusion, and threatens the refinement… of existing health education.”
And I guess this is what my feelings really boil down to. Neither Tones nor I is against Health Literacy Month—the opposite, in fact. But the phrase is what I refer to as the language of handlers. It’s a phrase people in healthcare use to talk about the people who use healthcare. A speculative (and, as Tones points out, disempowering) way to discuss “the costs” of this evolving (and still unmitigated) blind spot.
(As if “the costs” aren’t manufactured into the very fabric of Western [and global] society...But again, I digress.)
The last thing I’ll say about semantics is this: “health literacy,” to me, shifts some responsibility away from the people who provide and facilitate healthcare to the people receiving it. Again, education is just the first step on this ladder. Access remains the biggest problem we need to solve.
Thankfully, I am not the only person who believes that a conversation about health literacy is really a conversation about healthcare access.
Since access is the basis for most health outcomes, the fact remains that we can't educate our way out of this. Despite the well-intentioned efforts behind raising awareness in service of health literacy, poor outcomes are not merely a consequence of lack of awareness. As it stands, people with better access to healthcare have better health outcomes. In more pointed terms, people with barriers to accessing healthcare have poorer health outcomes.3,4
Ergo, difference in access is the main driver of the outcome gap (which is aptly summarized by the term “health inequity”).
There have been dozens, if not hundreds, of reports, research pubs, and op-eds about health inequity and its many faces, so I will try to avoid repeating more carefully constructed truth-telling. But suffice it to say, health inequity is deeply tied to several social determinants of health (a phrase that has its own acronym; SDOH. Ugh).
What this means is that everything from poverty, education, and safety to access to nutritious food, clean water, shelter, and adequate healthcare—including the ability to reliably travel to and from appointments, afford the care you need, see specialists as needed, or get additional opinions, to name a few—affects people’s health outcomes. And, unsurprisingly, race does, too.3,4 There are several reasons certain demographics are disproportionately affected by the shortcomings of our current healthcare system.
On the ground level, delays and barriers to getting regular checkups, as much as being referred to specialists you can actually see, could be the difference between catching an illness when something can be done to change its course and missing that small and critical window.
When you consider all of the socioeconomic factors that contribute to health in general, it’s easy to see how we’ve ended up where we are: the people who suffer from the poorest health outcomes are also, generally, the least able to change the circumstances that led to those outcomes in the first place.
Access, and what the healthcare industry means by that, is also evolving. Access isn’t just about one’s physical proximity to doctors’ offices, or our financial means, or the ability to choose our care providers—it’s also about how healthcare is administered and facilitated.
Before the COVID pandemic, we used to list our entire medical history on printed forms that were then transcribed into medical charts. When medical charts went digital, our transcribed electronic records never transferred between providers (and they still mostly don’t).
Now, pre-visit paperwork is often sent through a secure link or is behind provider-specific portals that require an account to access. Or, even worse, things like appointment confirmations and pre-visit paperwork are handled by some cryptic or limited external agency that books appointments for multiple hospital groups.
Many providers also only send text or email appointment confirmations and reminders (though certainly not all), and because healthcare providers are seeing more patients than ever,5 things like visit or care summaries and lab results are often sent digitally, too—sometimes multiple business days after we’ve gone to the doctor. (Testing turnarounds are a subject for another time.)
All of this digital communication is done, we’re told, in service of helping ensure doctors have more time to actually see patients, and so other healthcare workers have time to manually process the patient information that still hasn’t been digitized. The unfortunate reality is that this shift hasn’t actually translated to more time with your actual doctor, because not only are there more patients, there is more paperwork, too. (Ask your doctor how they feel about prior authorization, for example.)
This pressure is felt from all sides, and the system is cracking under the strain of trying to provide care while turning a profit. At least that’s how I see it. If the variables underpinning access to healthcare weren’t complicated enough already, new layers of complexity to suffer through continue to be added regularly.
And we are, indeed, suffering.
Lest we forget about the challenges on the backend of healthcare: patients having to chase providers’ offices and billing departments to pay bills before they are sent to collections; the astronomical and ever-increasing premiums we pay just to negotiate “affordable” care (which is still not affordable for many); and things like tax-advantaged or employer-sponsored HSA or FSA accounts; plus all of the validation required to prove your costs are real costs for care that you needed… this—all of it—is too much for anyone.
It's certainly too much for me. And again, I’m in my thirties. How is all of this even remotely accessible for people who aren’t computer savvy, or who don’t have time to spend one to two hours twice a month chasing answers, paying bills, or trying to get an appointment? (Or, for people who don’t have internet or a personal computer, to download healthcare-related documents?)
These changes are reshaping our collective healthcare experience. Returning to the larger issue again, it’s really all about access. Are these changes making healthcare more accessible, or less?
I think you know where I stand on that.
So, what do we do?
I think we put our money where our mouth is. You can decide what that means for you, but for me, it’s how I talk to people I love about taking care of themselves. It’s being conscientious about the recipes I share, the products or brands I recommend, and (if I really love you) the research articles I curate and the notes I send with them. It’s sharing the knowledge I have acquired and asking questions about how someone’s health is, really.
It’s also being painstakingly deliberate with the way I describe the issues as I see them (and who and what I ally myself with).
Plenty of actual experts recognize the true drivers of health inequity. There are also some rumblings in the United States about policy changes that could improve several facets of accessing healthcare (and, importantly, affording it). I deeply believe our collective right to democracy extends beyond just voting, so we the people have to push our representatives to do more to address the growing problems in healthcare as a whole. This is the social policy change we need. It hasn’t happened in the fifty years since Simonds coined the phrase “health literacy,” so we have to get a little louder.
All of that said, my hottest take regarding healthcare is this:
No one is coming to save it. We have to save it ourselves.
So, decide what that means for you. Yes, we have a responsibility to educate ourselves—so we can turn knowledge into action. Without this leap, all of the knowledge in the world is only valuable to us as individuals. As I said earlier, we, as a society, have to take care of each other. We also have to hold the powers who shape the healthcare landscape to be more accountable until they take better care of us, too.
The last thing I’ll say is this: I am deeply grateful for the people running the advocacy groups who get things like awareness days (or months) approved.
Progress is often made through significant, and invisible, efforts. I think Health Literacy Month is doing a lot to bring the topic into public conversation—and that’s where change starts.
It’s also no coincidence that the people often pushed to the margins of these conversations also have awareness months, weeks, or days. Awareness “holidays” aren’t all holidays in the traditional sense; we are not always celebrating something (though perseverance is certainly worth celebrating). Many exist so we can have more honest conversations about why we need more awareness about a given problem or shortcoming of society and, importantly, how we can solve it.
All in, we must do more to make healthcare accessible for everyone. We have to advocate for the people being left behind in our current healthcare system. We have to push back on the assumption that we will all just acclimate to whatever half-baked policies or new ways of receiving care are thrust upon us. This is how, in the words of Bill and Ted, we can “be excellent to each other.”
We’re all we have.
Happy Health Literacy Month and International Day of Older Persons, comrades.
References:
- Tones K. Health literacy: new wine in old bottles? Health Education Research. 2002;17(3):287–290. https://academic.oup.com/her/article/17/3/287/658574
- Simonds SK. Health education as social policy. Health Education Monographs. 1974;2(1)(suppl):1-10. https://journals.sagepub.com/doi/10.1177/10901981740020S102
- Riley WJ. Health disparities: gaps in access, quality and affordability of medical care. Transactions of the American Clinical and Climatological Association. 2012;123:167-172. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3540621
- Agency for Healthcare Research and Quality. 2021 National Healthcare Quality and Disparities Report. Report No. 21(22)-0054-EF. Revised December 2021. Accessed October 1, 2024. https://www.ncbi.nlm.nih.gov/books/NBK578529
- Lane, S. More Patients... More Complex Patients. Accessed October 1, 2024. https://www.aapa.org/news-central/2017/02/patients-complex-patients
