Shree Mukilan Pari on Combating Health Illiteracy at Home and Abroad
Update (12/4/2021): With the continuation of the COVID-19 pandemic, the author Shree Mukilan Pari stresses the importance of health literacy.
We all grasp the importance of “traditional” literacy, which we understand to mean one’s ability to read and understand the written word in whatever language we speak. Literacy is a foundational skill, one that contributes to a more productive economy with better outcomes for people at every rung of the socioeconomic ladder.
This type of literacy is undoubtedly important. However, it’s not the only form of literacy we need to concern ourselves with. Others are just as fundamental.
I’d like to focus on one particular type of literacy today: health literacy, or the ability of healthcare consumers (every single person alive, to be clear) to grasp health-related information and make informed decisions around care for themselves and others.
The importance of health literacy is impossible to overstate. Unfortunately, health literacy just isn’t talked about in the same way, or to the same degree, as traditional literacy. This silence has real-world consequences, some tragic.
I’ll be devoting my career to cultivating a conversation around health literacy, joining a growing group of medical professionals and patient advocates (among many others) who recognize that the status quo can’t continue. I hope to be joined by others — maybe even you.
To truly understand why this issue is so important, we first need to understand what health literacy really means and how it empowers healthcare consumers. We should also acknowledge what’s being done here in the United States and around the world to advance the cause of health literacy. My own vision for a more empowered patient population aligns with these efforts, and I’m honored to share it here.
What Is Health Literacy?
First, let’s get down to basics and answer the question that most likely brought you here in the first place: what is health literacy, really?
The Centers for Disease Control defines two closely related components of health literacy:
- Personal health literacy: “The degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.”
- Organizational health literacy: “The degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.”
The United States’ foremost health authority, in other words, envisions a role for both individuals and organizations — companies, public agencies, nonprofit entities — in attaining and promoting health literacy. We all have a stake in our collective ability to navigate the numbingly complex healthcare system and make informed decisions for ourselves and others. As this ability improves, so do health outcomes.
Health literacy is an acquired skill or competency, and a holistic one at that. It’s also not a skill or competency that’s equally distributed within a population as diverse as ours. The U.S. Department of Health and Human Services says that “health literacy requires knowledge from many topic areas, including the body, healthy behaviors, and the workings of the health system…[and is] influenced by the language we speak; our ability to communicate clearly and listen carefully; and our age, socioeconomic status, cultural background, past experiences, cognitive abilities, and mental health.”
That’s quite a list. You’d be forgiven for thinking it all but forecloses the possibility of eradicating health illiteracy in our lifetimes — that, like poverty or racism, it’s all but intractable.
You’d be wrong about that. A fully empowered population of healthcare consumers is within the realm of possibility and closer to reality than most of us assume. To understand why it’s so important that we continue to work toward this goal, we need to understand the dire consequences of health illiteracy in the here and now.
The Causes and Consequences of Health Illiteracy
As I wrote, better health literacy really does lead to better health outcomes. The reverse, unfortunately, is also true: poor health literacy correlates with poor health outcomes.
To say it another way, health illiteracy does not promote optimal health outcomes. Health illiteracy reinforces existing inequities in healthcare delivery, access, and understanding, leading to preventable and potentially tragic outcomes.
This problem stares us in the face; it’s impossible to ignore. According to the U.S. Department of Health and Human Services’ National Action Plan to Improve Health Literacy, nearly 90% of adult healthcare consumers in the U.S. “have difficulty using the everyday health information that is routinely available in our health care facilities, retail outlets, media, and communities.” In other words, about nine in ten Americans struggle to make informed healthcare decisions due to a lack of intelligible information.
This struggle stems in part from the myriad and often conflicting sources through which healthcare consumers receive this information, intelligible or otherwise. The National Action Plan to Improve Health Literacy identifies more than a dozen such sources in an admittedly less-than-comprehensive list:
- Discussions with friends and family
- TV, radio, and newspapers
- Websites and social media
- Doctors, dentists, nurses, physician assistants, pharmacists, and other health professionals
- Health educators
- Public health officials
- Nutrition and medicine labels
- Product pamphlets
- Safety warnings
In the United States and around the world, health literacy is closely correlated with other inequities. Here at home, the National Action Plan to Improve Health Literacy identifies segments of the population that are more likely to struggle with limited health literacy:
- Adults over the age of 65 years
- Racial and ethnic groups other than White
- Recent refugees and immigrants
- People with less than a high school degree or GED
- People with incomes at or below the poverty level
- Non-native speakers of English
Sadly, we can get more specific about the consequences of health illiteracy because we have ample data to draw upon. The National Action Plan to Improve Health Literacy describes several:
- Lower utilization of preventive services
- Poorer management of chronic conditions, such as diabetes, high blood pressure, and HIV/AIDS
- Poorer self-reported health
- Higher rates of preventable hospital visits and admissions
- Higher risk of medication errors
- Higher overall risk of mortality
The social and economic costs of these undesirable outcomes are staggering: between $106 and $236 billion U.S. dollars each year, according to HHS estimates.
Combating Health Illiteracy in the Developing World: A Plan for Healthier Rural Communities
If you can believe it, health illiteracy is an even more urgent issue in the developing world. I’ve been fortunate enough to work on this issue in rural India, where health illiteracy affects hundreds of millions of people.
As in the United States, the root causes of health illiteracy in India are complicated. But one big issue that I’m working to change is the persistent problem of villagers not paying attention to health issues and warning signs because they haven’t been told that it’s important to do so and lack access to affordable care.
For example, the village my father grew up in is not well-equipped to deal with medical emergencies. The nearest hospital is quite far away and is quite expensive for the average villager. This discourages residents from getting regular checkups to ensure they are in good health and seeking care when they feel sick. Many diseases and conditions go unnoticed, leading to preventable injury and death down the road.
I hope to change this through a nonprofit focused on health literacy. This organization would educate these villagers about the importance of regular check-ups and general awareness of health issues and risks. It would host multiple free medical clinics each year, where a doctor comes to the village and sees patients for a full day. Villagers would be able to visit the clinic, get full checkups or consultations for specific complaints, and obtain specialist referrals where further investigation is warranted.
This model will change the perception of medicine in rural India and make it more accessible to everyone, regardless of socioeconomic position. Eventually, the hope and expectation is that residents of rural India will be more aware of medical issues — more health-literate — and take their health more seriously. If successful, there’s no reason not to expand the model to other villages and help others.
Health Illiteracy Affects Us All, And We All Must Do Our Part
Directly or indirectly, health illiteracy affects us all. Despite our best efforts to date, we’ve yet to eradicate health illiteracy. In many parts of the world, we’ve yet to make much of a dent in the problem at all.
I have hope that this situation is slowly but steadily changing for the better. When I look at the efforts of those who share my vision for a more empowered and educated patient population, I see signs of momentum. As members of my generation take on more responsibility for healthcare development and delivery, it’ll increasingly fall to us to maintain this momentum.
And, hopefully, to accelerate it.
We can’t do it alone. Those of us who’ve chosen to devote our careers to improving health outcomes around the world might share a powerful desire to leave humanity stronger and more resilient than before and a determination not to be deterred by setbacks — setbacks that will, inevitably, come.
Our number is comparatively small, however. For every one of us, there are hundreds of people who haven’t devoted their lives to this cause.
That’s okay. We don’t expect to win over the population of the entire planet. We wouldn’t want to, because then who’d be left to do all the other jobs that need doing?
We do need support from our friends, family, and communities, though. We have their backs, and we respectfully ask them to return the favor. Because health illiteracy affects us all, and we all need to do our part in the fight against it.
Do you see evidence of health illiteracy in your own family or community? What do you see being done to address it?