The languages of medicine. First,
there is the jargon-packed peer-to-peer language used by
healthcare providers to discuss patient care. Second
comes an even more elaborate language dedicated to
specialty medical care. A third language exists because
of the MSDRG system, or Medicare Severity Diagnosis
Related Groups. Different from providers' clinical
language, it is a language that belongs to data
collection and billing — but it is also a
language that providers must master.
Yet there is a fourth language that providers do
understand — but don't always speak fluently:
the plain language used by their patients.
"Doctors and healthcare professionals are
really good at listening to patients speak in plain
language when they describe what's going on with their
health," Stan Hudson,
Wisconsin Health Literacy (WHL) director said.
"Think about it: Providers don't need patients
to translate that plain language into a medical jargon in
order for them to make a specific diagnosis or create a
However, Hudson emphasized that because the reverse is
not always true, inequity can result.
"Providers can forget to translate their
information back into plain language for their
patients," he said. "This lends to
the creation of an unequal system of information-sharing
in healthcare. Healthcare providers don't always consider
that their use of jargon alone can lead to an information
divide or inequity. It's important for them to understand
that using plain language is important when communicating
with the people they serve."
Health Literacy: Skills, Demands, Expanded Definitions
Public health communication experts pointed out that
plain language is a key element of health literacy
(HL), previously defined 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."
In a 2017
Rural Monitor story, HL experts explained
that understanding health information has two sides.
First is the "skill side," described
as a measured proficiency, such as how easy it is to
complete a task like searching a medical brochure to find
a medical term definition. The second is the
"demand side," defined as the
"knowledge, skill, and cognitive effort that
are part of a health-related task." An example
is the comprehension, concentration, and attention needed
to fill out a complex form with legal jargon or
understand information with complex numbers or
instructions that come with lots of words with no
Dr. Paul Smith, an HL expert interviewed in the 2017
story, pointed out that it's important for healthcare
organizations to recognize that potentially all of the
patients who seek care can experience health literacy
challenges, depending on circumstances:
"Even for the folks who do have [health
literacy] proficiency, all you have to do is to give them
a cancer diagnosis, make them sleep deprived,
experiencing severe pain, any of those things that happen
all the time in a hospital or an emergency
said. "Anybody, anybody with
those things happening is going to have trouble
processing, remembering, or making decisions related to
As the medical field advances, its technical and
professional language changes. HL experts said this
modernization requires patients to advance their ability
to access well-vetted and plain language health
information. After several years of discussion and public
two expanded definitions for HL have also emerged as
part of the Office of Disease Prevention and Health
Healthy People 2030:
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
Organizational health literacy: the
degree to which organizations equitablyenable individuals to find, understand, and
use information and services to inform health-related
decisions and actions for themselves and others.
Of note, for the first time, HL is now a
central focus in Healthy People
2030, the ODPHP's fifth iteration of the work.
The HL of Rural Populations
One of the first reports — and still one of
the few comprehensive reports — on rural
health literacy came from the distillation of data from
national HL survey. In their 2009
academic paper, the authors said that after
adjusting for important variables, there was no
significant difference in health literacy between rural
and urban populations. Instead, noted variances were
"linked to differences in age, gender, race,
ethnicity, education, and income," rather
than ZIP code.
A recent 2020
global review found that
"rurality alone does not explain rural-urban
health literacy differences and that sociodemographic
factors play important roles." State-level
rural insight comes from a recent COVID-centric study
HL in rural Arkansas that found that lower HL was
not necessarily linked to lower income.
Organizational Health Literacy: What Are the Benefits?
Research has provided evidence around the advantages of
organizational health literacy (OHL), and the National
Academy of Medicine (NAM) has been at the forefront of
OHL work with a
2012 paper focusing on the 10 attributes of OHL. In
2018, NAM sponsored a
workshop that focused on the effect of HL
interventions on "costs, quality, behaviors,
outcomes, and other areas." In their
commissioned paper for the event, WHL's Hudson and
coauthors provided a financial and ethical HL-linked
overview, noting, "Health literacy is not just
the right thing to do for the patient. It is also the
right thing to do to make sure we control costs and
2018 academic review outlining transformation
steps, a Canadian team found that the top 6 barriers to
improving health literacy within an organization were:
Low priority of health literacy and related
Lack of commitment to health literacy
Limited or no buy-in from leadership
Perception that becoming health-literate is not
Lack of culture of change and innovation
No change champions in the organization
2021 review, European authors included which
implementation steps had a positive impact on
Embedding strategic priorities, frameworks, and
Organization-wide platform to revise health
information materials, including website design that's
easy to navigate
Service procedure redesign to improve HL screening
and patient engagement
Staff HL capacity building (communication)
The Digital Influence of Accessing Health Information
Almost every aspect associated with the activities of
daily living is experiencing pressure to move to either
an online site or a mobile app. Experts said this
pressure is taking HL right along with it —
resulting in a need for an additional HL definition:
digital health literacy (DHL). A 2006 definition
of DHL that's commonly cited — and one of three
used by the World Health Organization — is
"the ability to seek, find, understand, and
appraise health information from electronic
sources and apply the knowledge gained to addressing
or solving a health problem."
Although HL experts have recognized the role of
digital problem solving as related to DHL for more
than two decades, nomenclature has been varied, with
DHL also referred to as eHealth, mHealth – or, as one
expert pointed out, "twenty-five years ago,
it was called consumer health
In highlighting DHL's differences from "other
distinct forms of literacy," authors of a
2019 paper distilled a digital HL skill set down to
basic reading and writing skills; possessing the
ability to use a computer; and "understanding
how, why, and when online health information is
created, shared, and received."
Experts agreed that although
"digital" is having a tremendous
influence on where health information is parked,
attention to how patients are able to access or process
the information in that digital parking lot is lacking.
Some experts suggested that efforts to create a new
"digital" health literacy playbook
for improving access are slow or even non-existent.
Several Society of Public Health Education leaders
commented in a
2019 paper, "Despite widespread use of the
Internet and social media platforms by the public, there
has been little organized exchange of information among
the academic, government, and technology sectors about
how digital communication technologies can be maximized
to improve public health."
DHL, COVID, and College Students
Providing some insight into DHL consumer skills was a
recent study surveying a small number of
U.S. college students. Results indicated that a
higher digital HL —
but not traditional HL — "was
significantly associated with greater willingness to
get a COVID-19 vaccine and the belief that acquiring
the disease would negatively impact their
Dr. Cynthia Baur, a member of the Secretary's Advisory
Committee on National Health Promotion and Disease
Prevention Objectives for 2030's Health Literacy Subgroup
and director of the University of Maryland School of
Public Health Horowitz Center for Health Literacy,
commented on the speed of moving to improving patients'
access to digital health information.
"Public health and healthcare organization
leaders are the people who are in charge of so much of
the available information," she said.
"Ultimately this makes them the changemakers
for improving health literacy. They're the individuals
who'll need to drive the speed of change."
Long recognized as a leader in health literacy, WHL is
emerging as a leader in the DHL arena too. Hudson talked
about his organization's current work creating a program
that helps patients improve their digital access skills.
"Some time ago, we recognized that no one was
in the space of helping people find reliable online
health information," he said. "If you
could use a computer, you might enter a few words into a
search engine, next have to try to sift through millions
of results, and then try to figure out what was good
information. To help folks do the searches and find that
trusted information, we developed
Health Online: Finding Information You Can Trust, a
program funded by the Network of the National Library of
Medicine which provides community-based education for
just this type of need. It's a program we take into
communities. It's been really successful and we now
officially partner with the
All of Us Community Engagement Network in their
efforts to also provide training."
Improving Personal DHL: More about WHL's Health
With the assistance of grant funding, WHL created their
DHL program specifically for underrepresented
populations to be able to better access, identify, and
use reliable health information from internet searches.
Since 2018, WHL has completed over 60 community-based
workshops, which served nearly 600 people in urban and
rural communities. Fourteen train-the-trainer sessions
reaching about 150 librarians have also been completed.
More information about the project can be found in the
Phase 1 and
Phase 2 reports.
Baur provided examples of digital access barriers that
could influence research around strategic digital website
design planning and user testing.
If they do find their way into the information, they
can't always find their way back. Getting stuck in a
website causes lots of patient frustration.
"When a patient goes to a website, they don't
know the usual organizational website conventions, or how
to anticipate a drop-down menu or how to toggle back and
forth between information tabs," Baur said.
"If they do find their way into the
information, they can't always find their way back.
Getting stuck in a website causes lots of patient
Baur also discussed some of her organization's research
around accessing digital health information.
"We've found that just because people have
smartphones, they're not necessarily smartphone
application users," she said. "If
they do download apps, they may not be able to use them
Eye on Apps and Health Outcomes
2020 paper in Nature found only a
"small number of clinical scenarios where
published evidence suggests that mHealth apps may
improve patient outcomes."
Talking about the digital challenges associated with
"patient portals" specifically,
Hudson also shared examples of digital barriers. A
portal refers to "a secure online website
that gives patients convenient, 24-hour access to
personal health information from anywhere with an
"If you want to ask your doctor a question,
anymore it is preferred you use your health portal to get
a response," he explained. "Patients
have to access their portal, leave a typed message, and
then someone in the office will respond, but usually only
online in the portal. We are finding that more and more
of our community-based session attendees are requesting
instruction around their patient portal use."
Hudson also said that the patient portal access looms
large for patients because every health system and
insurance company customizes their electronic record and
website. Every customized label that exists for the same
website feature looks different from organization to
organization. Specific feature tabs also differ in a
location and content that varies from portal to portal
and website to website. He said the complexity and
confusion grows if a patient's insurance changes, or a
patient changes or adds new healthcare providers.
"Additionally, the healthcare industry really
doesn't use much user testing prior to any digital access
implementation," Hudson said, in contrast to
other businesses and organizations.
Broadband Inequity = Health Information Inequity
Experts said it's simple: No broadband, no health
information access. Sometimes these limitations translate
into a scenario not atypical for rural patients who end
up with a face-to-face encounter as the only option for
accessing health information. Experts said to consider
this: A typical long-distance rural geographic footprint
compounded by bad weather? It's hard to justify a
three-hour drive in bad weather for a 10-minute
face-to-face discussion just to get health information
that could have been accessed online.
Baur said that rural health broadband advocates might
want to fold these aspects of HL into their efforts to
increase rural broadband infrastructure.
"Rural healthcare advocacy is critical for
digital services in their communities since these digital
connections are necessary for health information
access," she said. "The pandemic has
really exposed this inequality: If people are not
connected to the digital infrastructure, they're left
Other HL experts pointed out that rural broadband
inequity not only limits access to public health digital
information, but to personal digital health information
found only in the electronic health record. Rural data
looking at the extent of patients' digital access of
their health information is sparse. A
2016 data brief from the Office of the National
Coordinator (ONC) found that in 2014, 14% of rural
respondents had reviewed personal health information
results compared to 23%/26% in suburban/urban areas.
ONC 2021 brief reviewing 2020 smartphone app and
patient portal access survey data — a brief
that did not include rurality — found that
about 40% of those surveyed used their smartphone to
access their patient portal. Additionally, 30% had
downloaded their medical records, a percentage that had
almost doubled since 2017.
Leila Samy is ONC's Chair of the Strategic Management
Advisory Committee, a founding member of its committee on
diversity, equity, inclusion, and accessibility, and
serves as rural health IT coordinator. She said ONC
continues to be active in improving equitable access to
digital health information for all patients, including
those in rural areas. Additionally, ONC has heard that a
top challenge for rural providers is the cost to set up
and maintain interfaces to exchange data with a varied
landscape of exchange partners. ONC's recently
Exchange Framework and Common Agreement
(TEFCA) will help rural providers by decreasing
the administrative burden and costs associated with data
exchange. She commented that these efforts, as well as
ONC's efforts to guard against information
blocking, would have downstream positive impacts
"Health literacy is an important dimension to
engagement," she said. "We don't
want individuals living in rural communities, including
rural tribes, Veterans, and other rural
residents, to feel like they are on the outside looking
in because of a digital divide."
Digital Decision-Making Health Tools
While the solution to the rural digital divide is
awaited, Baur offered that there is a need for continued
forward motion on improving the functionality of
available digital health information.
"We need to take advantage of what we
can't do in the paper world instead of just
recreating an online text-heavy brochure," she
said. "For example, for those with reading
difficulty, a smartphone application could include a
click button so the information could be heard instead of
read. We also know that people are very attracted to
audiovisual content, so we need to question whether we're
really doing enough in this space and research best ways
to fill any gaps."
Baur also discussed the benefits of interactive digital
decision-making support tools: for example, those that
provide risk assessments. She noted that although
healthcare providers believe these provide valuable
information, they need to recognize that their patients
still need to understand why the information is
valuable. Using the example of the
BMI calculator, or body mass index, she emphasized
that risk is a very complicated concept.
'At risk' is a phrase we use all the time in public
health. If people are at an increased risk, we point out
ways they can lower their risk. But that still requires
"Although a calculator mitigates low numeracy
and graph-reading skills, people still need to know what
a body mass index is and how it's a guide to risk if the
numbers are high," she shared. "'At
risk' is a phrase we use all the time in public health.
If people are at an increased risk, we point out ways
they can lower their risk. But that still requires
further explanation. You can automate certain things in
health and still not have sufficient explanation to help
people appreciate why they should care about their BMI or
their diabetes risk or whatever the risk being
The Rural Future of Health Literacy
Baur pointed out the importance of future HL/DHL
research. Though some experts believe that HL needs can
be addressed by using a universal approach —
exemplified by the
Agency Research and Healthcare Quality's (ARHQ) HL
toolkit — she said she believes that
looking at specific population needs like those of rural
residents are important. For example, asking how
healthcare information gets into and circulates in a
community provides insights into health
information-seeking and studying the number of repeat
exposures to information to improve awareness and
comprehension might be required as well.
"There's still work to be done to try and
understand what, if anything, is different about the kind
of health information access and communication is
happening in rural communities," she said.
"Assumptions are made, but whether those
assumptions are true should be evaluated, especially
those questions about health communication being
different for rural residents."
In summary, Baur and Hudson returned to the basic aspects
of HL that they believe are important with regard to
rural populations as well as for urban populations.
Health literacy is not actively arguing
about what health behavior must be used
to stay healthy. That's not going to work with a lot of
"Health literacy is not actively
arguing about what health behavior must be used
to stay healthy," Hudson said.
"That's not going to work with a lot of people.
It's making sure people have access to well-vetted health
information that's easy to understand. That way people
make up their own minds."
Baur adds an additional perspective, providing a reminder
for healthcare systems with an eye on equity.
"Health literacy is a pretty straightforward
idea," she said. "Most people know
that understanding what's going on with their health is
important. They also understand and have experienced that
getting good care and services and information is way
more burdensome than it needs to be. However, they're not
really sure what to do about it. They feel it's their
problem — their lack of knowledge or skill,
which leads to their inability to access what they need.
However, what they're actually dealing with is a highly
Strategic Publications & Notable Health
With a perspective gained from many years as a physician practicing in rural and urban locations, Dr. Kay Miller Temple writes on a variety of rural health topics and programs for RHIhub's Rural Monitor and Models and Innovations. She has a master's degree in Journalism and Mass Communication. Full Biography