**Advancing Health Literacy: Meeting the Needs of Adult Learners**

**Event ID: 119081**

Dr. Sandra Baxter: Good afternoon. I am Dr. Sandra L. Baxter, Director
of the National Institute for Literacy. Thank you for joining us today
for what promises to be an engaging and informative discussion of new
approaches to advancing health literacy in collaboration. We have
assembled a panel of scholars, researchers and practitioners whose work
in the fields of health and literacy are helping to challenge how we
view, understand and respond to the health literacy needs of adults with
low literacy skills.

The Institute is pleased to host today\'s webcast, \"Advancing Health
Literacy: Meeting the Needs of Adult Learners\" and we are coming to you
live from Washington, D.C. The Institute is a federal agency and we are
charged by Congress to provide national leadership on the issue of
literacy across the life span. An important part of the Institute\'s
mission is to serve as the national resource for adult literacy programs
and as the clearing house for research in resources when reading,
reading instruction and adult literacy.

The 2003 National Assessment of Adult Literacy, also known as the NAAL,
provides us with important information about background factors
associated with literacy and the skill levels of America\'s adults. The
2003 NAAL also included the first- ever national assessment of adult\'s
ability to use their literacy skills and understanding health related
materials and forms. The NAAL found that 13% or 30 million adults are at
a below basic level in health literacy and 3% of adults or 7 million
adults were at the bottom of the below basic health literacy level.
These are the people who did very poorly on the NAAL core assessment
according to Dr. Sheida White, Project Officer for the NAAL.

The NAAL incorporates the definition of literacy that was developed by
the Institute of Medicine and the U.S. Department of Health and Human
Services. That definition can be found in the objectives of \"Healthy
People 2010\". It 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.\"

Health literacy is important for all adults. It is not just important
for those who cannot read. It also and can be an issue for the well
educated, to know and understand information needed to make everyday
decisions ‑‑ health decisions. Making good decisions ‑‑ good health
decisions depends on people having a high level of reading and
comprehension skills. Just think about the last time you picked up a
health magazine or a pamphlet while sitting in your doctor\'s office. Or
think about a decision you had to make when buying an over‑the‑counter
medicine. Or how you felt when you had to give advice to an aging parent
on issues about end of life care. All of these activities required and
are facilitated by the ability to read and understand written and
printed information.

We want to kick off our discussion this afternoon with an exchange about
the definition of health literacy and how we define it can shape and
influence work in the area. We are pleased to be joined by three of the
nation\'s leading experts on the subject of health literacy this
afternoon.

Dr. Andrew Pleasant, an Assistant Professor in the Department of Human
Ecology at Rutgers University is the co‑author of \"Advancing Health
Literacy: A Framework for Understanding and Action\". He has published
extensively in the areas of health literacy, evaluating the use of
health research in society aniline science and environmental
communication. Welcome, Dr. Pleasant.

**Dr. Andrew Pleasant**: Thank you.

**Dr. Sandra Baxter**: Next, we have with us Dr. Ian M. Bennett, a
physician and Assistant Professor at the University of Pennsylvania
School of Medicine and Graduate School of Education. The National Center
on Minority Health and Health Disparities, part of the National
Institutes of Health, have named Dr. Bennett a health disparities
scholar. His work has focused on linking adult basic literacy education
programs to health literacy interventions for adults with low literacy.
Ian, welcome and thank you for joining us today.

**Dr. Ian Bennett:** Good afternoon.

**Dr. Sandra Baxter:** I\'m also pleased to welcome Dr. Susan R. Levy, a
Professor Emeritus of public health and education at the University of
Illinois at Chicago. Dr. Levy is currently a fellow in the Institute for
Health Research and Policy at the university. She was previously
director of the University of Illinois Chicago Center for Health
Promotion and Disease Prevention Research. Her research and intervention
work has focused on schools and risk reduction, HIV and abuse ‑‑
substance abuse. We at the Institute have had the pleasure of working
with Dr. Levy as well on the development of a multi disciplinary health
literacy project and curriculum that you will learn more about during
this web cast. Susan, welcome this afternoon.

**Dr. Susan Levy:** Thank you very much.

**Dr. Sandra Baxter:** Well, we want to get our discussion under way as
quickly as possible, but what I\'d like to go back to is the definition
of health literacy and have you weigh in on that definition I read to
the public just earlier.

**Dr. Andrew Pleasant:** Well, I know people would like to roll their
eyes when they hear ‑‑ we\'re going to talk about defining health
literacy yet again, but in my opinion it\'s a really important task
because the definition is going to establish the way that you\'re going
to evaluate health literacy. And those outcomes, especially in this
funding scheme, are going to turn out to be really important. The
outcomes of evaluation are going to predict where funding is going to
flow. So, if you start with a limited definition then you have
inherently limited the field.

**Dr. Ian Bennett:** And the other point that I think is really
important to mention is that there is really a wide range right now of
what people feel is the definition of health literacy. So, it\'s pretty
common for me to experience saying that I work in health literacy and
have some one think that they understand what I mean by that. And it\'s
often the case that we don\'t share that definition.

**Dr. Susan Levy:** And if people don\'t share the same definition, what
occurs is they hear different messages and the misinterpretations can be
very damaging.

**Dr. Sandra Baxter:** Well, I know that this is an important issue and
I\'m sure we\'re going to come back to it during the course of your
presentations, but let\'s just get started now on the presentations.
Dr. Pleasant, would you like to begin for us?

**Dr. Andrew Pleasant:** All right. I drew the short straw. Thanks for
tuning in or browsing in as the case may be. They tell us we each get 15
minutes of fame, so I unapologetically am going to go quite quickly
through a number of slides to try to cover some fairly good territory
here.

I\'ll begin at what I think is actually the beginning of health
literacy. I want to remind people actually that health literacy did not
start as a field of study at least in the United States. The really
first connections between literacy and health were made internationally.
A lot of those articles came out of Africa and then there\'s a long
history in India and other countries of addressing literacy related
issues.

In this country it tended to start in two communities: one, the
healthcare professionals who are mainly initially concerned with patient
compliance issues and the adult basic education and the literacy
professionals who found that health could be a real motivating factor
when you included it in curriculum. Another important thing to remember
is that neither of these communities settled on a single definition of
health or literacy before other people came along and put them together
into the phrase \"health literacy\".

Now, academically the field can be seen as really quite a success from
some counts. This is a simple little graph that shows the growth and the
peer reviewed articles by year and a number of databases, really
beginning in the early \'90s and then to 2007. It\'s in the last few
years suffered ‑‑ experienced almost exponential growth. And from a
policy perspective you can see that the NALS and the NAAL, the two
National Assessments of Literacy, really seem to at least coincide with
real growth spurts in the field; the beginning and then the later
exponential growth. But again, I think we need to remember that around
the world there have been people who have been addressing these issues
for a very long time.

This is just on the same graph two examples of the National Literacy
Movement in India hat really started back when Gandhi was working to
kind of take back the means of production and literacy was one of those
very important goals that he set for that nation of India. So, in a way
we\'re coming a long way to something that\'s been really active around
the world for quite a while.

So, we can ask, why all this interest in the U.S. here and now? Well,
it\'s not a coincidence in my mind that health literacy really began to
emerge along with this changing burden of disease and that\'s from an
acute disease to a chronic disease condition. That\'s where you get
these physicians and I think most notably the Surgeon General Carmona
who will tell great stories about here I am working in an ER for years
and realizing that I\'m treating the same preventable diseases and
sometimes with the same people over and over again. So, what\'s causing
that? That certainly contributed to the growth of health literacy.

Also, the fact of the matter is that just medicine itself has changed
and now a lot of the ways to advance health are based on knowledge or
new technology that requires literacy skills. We also, in this country,
but not only in this country have a situation of increasing inequity in
health, which again points out why health literacy is important. Quick
example. In basically my lifetime, if everyone in the United States had
the same health as the whites in the highest income group then 14% of
premature deaths in the white and 30% among other racial and ethnic
groups would have been prevented.

Now to me, 14% and 30% is pretty astounding, but I did the numbers and
actually ‑‑ that\'s 5 million people who died earlier than they would
have and health literacy has to be one of the causes of that. So, it\'s
certainly important from that perspective.

We have continuing issues with navigating the healthcare system and this
is just one quick example. At an urban teaching hospital in New Jersey
students and I did this project last year and they basically had to go
find things in the hospital with a little literacy hurdle thrown on
them. In 73% of the cases they couldn\'t find the destination without
help. And then half of those it took at least two staff members to
provide them the help so that they could find what it was that they were
looking for in the hospital. These were simple things like the chapel or
where my sister might be having a baby.

We also did a test that we called \"looking lost.\" In that, we had one
person walk around the same nursing station six times deliberately
looking lost. In 75% of those times no one ever asked them if they
needed help. The students reported that the nurses actually had to work
hard to not see them because they were so blatantly lost.

Now, why is this important? Because these are the sort of things that
cause interruptions in the medical staff. The Institute of Medicine has
confirmed that interruptions are one of the causes for medical mistakes
and you know that medical mistakes are not going to be able to be billed
beginning, I think, next month. And so, there\'s a clear financial
incentive to invest in some of these areas as well as the potential for
better health outcomes.

Now, if that\'s not enough there are even more and more complex
interfaces that health literacy requires us to interact with in our
daily maneuvering of the world. For example, multiplication of
information sources. The Internet is both good and bad. How do we
navigate that territory? The complex bureaucracy of health insurance;
the lifestyle and self management that chronic disease requires us to
do; ongoing doctor/patient communication issues. All of these add up to
why the U.S. pays more per person and gets less in health than any other
industrialized nation in the world.

We also need to remember that this is an issue that\'s not going to go
away soon. You look around this country. This is a recent study.
Graduation rates for the principal school districts in the 50 largest
U.S. cities ‑ 51.8%. That means 49% ‑‑ 48% are not graduating. This is
not an issue that\'s going to go away soon.

So, from that beginning where is health literacy today? Well, clearly
it\'s come a long way in a really short time because just a couple
decades ago there was no such thing as health literacy. People didn\'t
address it. It existed, but we didn\'t have a name for it.

Here\'s a first of a few cautions that I want to throw out. We currently
risk being co‑opted into just providing plain language materials and
that is not going to solve the solution. Why? Because a good document in
a bad healthcare system is still going to be ineffective, if it\'s put
into place at all. And if it is used, it could even be harmful. Imagine
you give a really well‑written publication to a patient who then says,
\"Oh, I have all these questions\" but the physician doesn\'t want to
take time to answer the question. So, in fact that document can become
harmful in some instances. So, it takes more than just re‑writing
materials.

I think to reach that goal what we need to do is change the discourse
and the practice about health literacy from just fundamental literacy,
the reading, the writing, the speaking, the numeracy in health to an
approach that sees it as a complex social determinate of health and we
focus on empowering the people. That means that we\'re going to address
the symptoms and the causes of health literacy, not just the symptoms.

Now, this doesn\'t mean don\'t rewrite materials. It just means don\'t
think that\'s the total solution and it doesn\'t mean don\'t focus on
the people at the below basic level. It means do that and look at the
larger issues surrounding health literacy in this country at the same
time.

Now quickly, this is some of the differences in the literature from
these two sorts of approaches. The fundamental literacy in health model
has developed the simple screening tools that we all have heard about.
It tends to have the focus on the individual, looks at rewriting as a
primary practice to address health literacy, often focuses on clinical
encounters, unfortunately tends to blame individuals as lacking in
something, and because of the screening tools is the source of most the
empirical data that we have to date.

On the other hand the social determinant and empowerment model tends to
have a population in the public health focus, tends to look for system
changes and identify social and political causes. It sees health
literacy as a problem that everybody faces in varying degrees and also
is the source of most of the theories and conceptual frameworks in the
academic literature. I don\'t think this should be an either/or. I think
it should be both. And the only issue I would have is people who say it
should be one or the other. I think you need to recognize both are
needed.

Here\'s one quick example of how the difference can materialize in
actual practice. I\'m sure most of you recognize this graph. It\'s from
the National Assessment of Adult Literacy Reports. It reports on the
percentage of adults in each health literacy level when they ran the
survey in 2003. When I show this to audiences and I ask them where is
the problem with health literacy, they always say it\'s the 14% at the
below basic level. That\'s where the problem is. Why? Because it\'s to
the left of the zero. It\'s the negative side. It\'s the drain on
what\'s presented as an otherwise literate society.

And then I\'ll ask the people, \"So, which level is sufficient?\" And
they will say based on this graph, \"Well, it\'s clearly got to be the
basic level because they\'re above the zero. Everybody else is okay.
It\'s the below basic that\'s the problem.\"

You can take the exact same data and reframe it like this. First of all,
everybody is in the same pie. We all have the problem. We just have it
to varying degrees. This lets you then point out another outcome on the
same data. You can say, \"Look, almost nine out of 10 adults in this
country are below the proficient level.\" And if you add in the percent
that couldn\'t actually be tested, it\'s more than nine out of 10%, but
they tend to be left out of the equation when most of this data is
usually reported. So, it\'s same data, very different story and a very
different outcome.

I just should remind you what does proficient mean? One example; it
means that someone could look at a graph and say, \"Hmm, here\'s my
income and here\'s my family size and I belong right here. Ah, that\'s
how much health insurance I have to pay.\" People had to do that, I
think, 67% of the time. Not all the time, just most of the time, do that
correctly, as an example, just one, of proficient level. That\'s not a
very high bar. Just being proficient doesn\'t necessarily mean that much
right off the bat.

If you look at the literature before the NAAL, you\'ll find that 300
studies have demonstrated that most health materials are beyond the
comprehension skills of most Americans. Now, if you frame health
literacy this way all of a sudden the policy implications can be seen
differently because we don\'t just deal with 12% of the population at
the below basic level. It\'s a problem everybody faces and policy needs
to then address that.

I\'m not really alone in taking this angle on health literacy. This
report just out from the Commission on Social Determinants of Health
just a week and a half ago. In the context of arguing that social
injustice is killing people on a grand scale around the world they argue
that the scope of health literacy should be expanded. They say that
health literacy is not just about the individual\'s ability, but also
the ability of public and private actors and that improving health
literacy is the way to reduce health inequity. I think we all agree on
those goals.

So, how do we get there? It\'s going to take multi‑ sector partnerships
and by multi‑sector I mean literacy, education, health, public health,
social services at large. No one of us generally has what it takes to
launch a comprehensive health literacy initiative alone. And when we
launch these initiatives we have to focus on actively engaging people
versus treating them as passive learners. That\'s one of the biggest
differences in practice that health literacy puts forth versus health
education or a health communication initiative; active engagement.

How do you do that? First, know your audience; the one you have, the one
you might have and the one that you want. And if you don\'t know that
off the very start then you\'re starting in the wrong place.

Golden Rule Number 2: Don\'t go it alone ‑ involve your audience early
and often. That means if you\'re going to be re‑writing materials for
someone involve the target audience in that rewriting process. There\'s
no better expert in health literacy then the people who live it every
day.

Why do we need to do this? Because health literacy is complex. It\'s not
a simple problem. If it was a simple problem we wouldn\'t be sitting
here anymore. It would have been solved already. This is a relatively
new and old definition at the same time because I merged what the World
Health Organization has just posed to what my colleagues Chris
Zarcadoolas and David Greer and I have worked out for a number of years
now.

There are four key elements to this definition: finding, understanding,
evaluating and using information basically to improve your life in a
variety of contexts. Why? Because if you can\'t find it you\'re not
going to understand it. And if you can\'t understand it, you\'re not
going to be able to figure out how it fits into your life. And if you
can\'t do that, you\'re certainly never going to be able to use it. Now,
some people want to say \"communicate\". We said \"use\". I don\'t think
that\'s such a big difference. We can certainly work that out.

And when you take those skills into the world and use them you encounter
a host of complex challenges. Just imagine when you\'re sitting talking
with a physician, a very common health literacy scenario. First of all,
is the language level appropriate, the fundamental literacy? Can you
understand? Secondly, can you navigate that power relationship with the
physician so you can ask questions? That\'s a power relationship. Third,
you have to be ‑‑ can you understand the scientific jargon or does the
physician have the skills to deconstruct the jargon for you? And
finally, can you understand that you both might have a very different
definition of health based on, in essence, your cultural perspective.

The physician might say, \"Health? Oh, that\'s just the absence of
disease.\" And you might take something like the Ottawa Charter\'s
position that health is a resource for living. Those are very different
outcomes and approaches to exactly what health is and they\'re based in
culture.

So, when you do this and you create these collaborations and you say
we\'re going to address this complex issue, what are you going to
encounter? You\'re going to be just like an adult learner because
whether you\'re from the literacy side or the health side you\'re going
to encounter vocabulary that you\'ve never heard before. What\'s the
NAAL? What\'s the TABE? I have no idea. What are these acronyms? I\'ve
never heard them. Its jargon on each side, so you have to learn a new
language.

Questions are going to emerge about whether you have the capacity to
deliver the goods. Both sides of this equation, health and literacy, are
generally overstretched in the work that they\'re currently performing.
So, how is that going to happen?

And thirdly, to someone who hasn\'t let\'s say moved beyond the notion
that health literacy is just reading or writing information about health
this might very much look like herding cats because they\'re not taking
a complex understanding to what it is that you\'re actually trying to do
in the initiative.

How do you get it started? There\'s a number of strategies that you can
use and these have been done. I\'ve talked with people who have formed
collaborations and coalitions across the country and these tend to be
the approaches that people have taken with varying successes. So, I\'ll
just throw them all out there.

First of all, you have to learn a new language. You have to be an adult
learner yourself. Speak up in public. Go to a meeting. Let\'s say you go
to a hospital meeting and you stand up and say, \"What are you doing
about health literacy?\" What\'s the answer going to be? It might be
nothing. It might be everything, but that could start the dialogue right
there.

Ask questions. You can send your staff to meet with staff, either
direction. You can send board members to meet with board members, either
direction. Build a coalition in your community. Get media attention
because of that and then make the connections. Find a funder, find a
solution instead of talking about a problem and you can bring in an
outside expert or a national organization and put a spotlight on the
issue in your town. Those are ways to get it started.

When you do, you\'re going to find that there are some real
opportunities in place. No one disagrees with the goals of better
health, equity and health system performance. Both sides ‑ everyone
agrees with that right off the bat. You just have to talk to each other
and identify that those are the opportunities that exist. You will find
that you have uniquely complementary resources, but you\'re going to
have to prove that to yourself first because many of you are going to
doubt that. You\'re going to say, \"What can I do for a hospital?\" And
the hospital is going to say, \"What can we do for an Adult Basic
Education Center?\" Because they\'ve never asked the questions of
themselves. Start it and you will find the answers.

The healthcare system is increasingly being told to do this. Every
indication is that the Joint Commission is going to put health literacy
into the accreditation scheme and we have public policy that\'s pending.
Who knows whether it will pass or not, but the Health Literacy Act is
out there. Things are coming down the pike. So, people are being told to
do this: If you involve your adult learners they generally want to do
it. How exciting. You can even, if you make the arrangement right, pay
them for their time to help you re‑write materials. That\'s a
win/win/win for everybody.

Finally, two things. The long‑term path seems to be greater than the
short‑term costs. We need more data, but everything indicates that if
you invest money up front in health literacy now you will reap the
benefits in the future. And finally it\'s simply just the right thing to
do.

Here\'s a few cautions. When you start these coalitions don\'t
overpromise because you don\'t have to. The gains are there to be made.
If you address health literacy in your community, you will reap positive
benefits. So, don\'t shoot the moon. Just say we\'re going to try to
address this problem and we\'re going to do it incrementally one step at
a time.

Evaluate everything you do first, last and always so that you can
actually help us build data, present it to the rest of the community and
we can learn from what you did and what you didn\'t do. The most
frustrating thing to do in health literacy is to hear someone did a
project, but you didn\'t know it and you had to replicate the wheel and
do it all over again. So, help everybody else in the community out. Let
us know what you\'re doing and that will advance health literacy, which
is what we\'re trying to do together.

And one thing when you do this, don\'t forget, because we tend to use ‑‑
I do it too. Hospitals and literacy programs as our primary examples for
some reason or a clinical study. There are lots of potential partners in
your community. There are Departments of Public Health. There are area
health education centers, the federally qualified health centers. Don\'t
forget environmental health. Donald Nutbeam\'s earlier article on health
literacy clearly postulated that one of the outcomes of improved health
literacy in a community was improved environment.

Don\'t forget the K‑12 school system. They are still potentially strong
partners in any health literacy initiative that you do at the community
level. And for those of you who are near a land grant university
there\'s an entire nationwide system called Extension and that brings
expertise from the university to the community. They\'re in place and
they would love to help on these things.

And finally, remember George Bernard Shaw really had it right years ago
before we even started talking about health literacy. The biggest
problem with communication is the illusion that has occurred in the
first place. And with that, I\'m happy to turn it over to Ian.

Dr. Ian Bennett: Thank you, Andrew. That was, as always, an engaging and
interesting presentation. The two of us have had an ongoing discussion
about literacy and looking forward to doing more here.

Today, I\'m going to be presenting some information on women\'s health
and literacy. Within the context of this particular presentation, I\'m
trying to accomplish two major things. One, to bring women\'s health
into ‑‑ and actually it\'s primarily reproductive health that I spend my
time working on, but it\'s really part of the whole life course
component of literacy and health.

And also to talk about linking in a more concrete way ‑‑ I\'ll use an
example of a project that we\'re just wrapping up where we work together
between the healthcare ‑‑ the Public Health Maternal Child Healthcare
Delivery System and the ABE Adult Education System. So, I\'m going to
start out real quickly just showing a few kind of conceptual slides
talking about what it is when we think about literacy and health. I like
to remind myself that it\'s not so simple. It\'s just thinking about the
healthcare setting and none of us here would have any problem with that
confusion.

But just to kind of remind myself in looking at this figure really think
about ‑‑ I like to think about the interaction of health and literacy
through the life course starting out with the disparities that we see in
education and health outcomes before school starts in the preschool time
where there are already differences; preparedness for education and then
where literacy primarily is developed, at least a formal later stage of
literacy happening in a formal education system and the interaction
between literacy and education; how far you get and education is really
related to how strong your literacy is early.

And then finally, you move into the domains of adult life; things like
employment, civic domains, legal, family economics, but then there\'s
healthcare right in the middle, which is where I like to think of health
literacy as being primarily focused in around that context, but let\'s
not forget that so many other areas are influential on health in not
just healthcare and healthcare delivery but all of the other components
in someone\'s life that are affected by literacy and also affect health.
And finally, how that relates to health across the life course.

I like to think about health and literacy kind of in this sort of way as
an individual patient. I\'m a physician, so I tend to think about
patients. An individual patient with their skills and characteristics
and there\'s the healthcare utilization; actually getting your vaccine
taken, getting to the doctor for pediatric care or prenatal care. And
there are all these obstacles that we\'ve set up in between. Things like
construction, scheduling, and readability and things of that sort. The
skills ‑‑ the health literacy skills are the skills that help you
accomplish or get over those hurdles. That\'s one way to think about it
at least.

This is another way to think about the life course of a woman. Starting
down over on the left where the parent\'s literacy is so important and
really influential on how many visits you get to. And what this little
cartoon in the middle is is a representation of the vertical axis of how
many interactions you have with the healthcare setting. And then across
horizontally is the time in years of your whole life. So, you can see no
big surprise, but I like to kind of visualize this.

There are many different kinds of encounters with the healthcare system
that someone will have to go through their life. And then at the bottom
there conceptually thinking of the accumulative risk of low literacy on
your health. Starting out small, you don\'t have ‑‑ there isn\'t much
that\'s affected you yet, but then gets much larger as you get later in
your life.

I just want to remind people that have probably seen this thinking about
the relationship between literacy and self reported health status. This
is data from the NAAL looking just at women between the age of 16 and 24
who are otherwise very healthy. That\'s a population that should be
quite healthy. I think chronic diseases haven\'t, for most people,
accumulated.

But look how dramatic the association is even at this early age. It\'s
really quite astounding. We see already the strong disparities by
race/ethnicity is just the one that I picked to show here, but it\'s
true for a number of other socioeconomic variables; that there is this
pattern of association between literacy and health status is maintained
across all race/ethnicities, but there\'s this big literacy disparity as
well. So, health disparities and literacy disparities are integrally
interlinked.

Now, getting to my next big point. Linking health and public health
interventions, maternal child health interventions, with adult basic
education. That is, for me, a very important area for development. What
would be the benefits for the Adult Basic Literacy Education folks as
compared to the public health folks? Well, ABLE, the practitioners are
highly skilled adult educators that know how to work with folks who are
from very vulnerable populations and they help them develop the skills
that we\'re really fundamentally talking about and building the skills
needed to fulfill their roles as parents, workers, citizens, patients,
et cetera.

From the public health point of view they are certainly used to working
with vulnerable populations, but often have difficulty actually
delivering services. Is there some way that these two folks ‑‑ two
groups can work together? I think that there are important ways that
they actually can.

The particular project I like to use as that concrete example is Take
Charge of Your health. It\'s a participatory health literacy curriculum
developed over about six years in collaboration between myself and other
investigators at the School of Medicine and Graduate School of Education
at the University of Pennsylvania and the Center for Literacy in
Philadelphia, a direct service provider of adult basic education
services.

Working with women with low literacy measured a variety of ways. There
are all kinds of acronyms we can use for that. The goal was to integrate
adult literacy instruction with relevant health information and health
navigation skills. Providing skills that are transferable and would be
able to help adults, women in particular in this case, navigate
specifically the maternal and pediatric care systems. And using those
particular obstacles as targets for working and getting ‑‑ helping women
develop skills to make it through that system, which is complex.

And then it was a participatory curriculum that increased with the goal
of increasing the relevance and interest among adult education students
in the adult literacy information being delivered. So, the idea was a
win/win for both sides. Getting information about health to patients ‑‑
that\'s what the public health site is. And from the adult education
side getting information that\'s contextualized and important to those
participants at the time that they\'re actually going through the
program.

So, the Philadelphia Preterm Prevention Project, a large multifaceted
intervention, public health intervention, for women who had just had a
preterm infant born before 35 weeks of gestation. Women were followed
for 18 months through the intervention. It included an adult ‑‑ the Take
Charge of Your Health intervention among others, but I\'m focusing just
today on TCYH. It\'s the acronym that we use.

There were many important lessons, I think, that came from this
collaboration. First of all, there was a natural link between the adult
education world and the public health world. The actual practitioners
themselves were speaking many of the same ‑‑ talking about many of the
same things. We\'re used to working with the same kinds of folks helping
them through the struggles that they\'re facing. But there were some
important things that we learned that didn\'t work so well.

First of all, the classroom model. We actually incorporated a classroom
model using what we learned from adult basic education. It\'s the
predominant way of delivering adult education curriculum and we used
that. We invited women who had just had a preterm infant ‑‑ after six
months so things could settle down a little ‑‑ to these classroom
programs and found that we had some struggles. And I\'ll talk a little
bit more about those details. We had to switch to an individualized home
visiting model which is much more traditional within the maternal child
care system.

So, let\'s talk a little bit about the classroom model here. We had a
full FTE adult educator that was able to provide both ABE and ESOL
program curriculum. We provided food. We provided transportation help.
We had computers and Internet access. We had child care as well
available. And we really felt that we were going to be able to entice,
invite and this would be something that people would be very interested
in coming to.

The goal, of course, was to be participant‑oriented, so participants
would come and brainstorm and work out what would be the focus at that
particular class and then the literacy and health information would be
integrated by the educator in an ongoing way. And that would be an
organic process.

Unfortunately, what we found was that there was very low participation.
Overall there were only two participants out of the several hundred who
were eligible for the program who actually participated in and completed
the 20 hours of instruction. We actually gave that a full year to try to
make work. We\'re trying all sorts of things to try and make it work and
we really found that it just wasn\'t going to ‑‑ we weren\'t going to
get very far with this model.

So, there was though among the participants although not everyone
completed ‑‑ only a couple completed ‑‑ other people were participating
and there was particular interest in the Web focused instruction around
navigating health information on the Web. But again, by a very small
proportion.

So, the obstacles. What obstacles could there be to incorporating this
kind of model? We think that, of course, like usual there are competing
priorities with any young parents and they have complex lives. It\'s a
vulnerable population. Transportation and child care we tried to take
care of, but scheduling and inflexibility was an issue. We were telling
people that they needed to come to a specific time and specific place.
There were only two classes per week. That\'s actually a pretty big
hurdle for a lot of folks.

In addition ‑‑ so, we switched to another model which was the
individualized home visiting model based on, as I mentioned before, a
home visiting model used very frequently in the maternal child health
system. So, taking a page from this well‑established approach. Emphasis
was on healthcare navigation or health literacy as we modeled it and
learners directed the topics. We would have visits. The adult educator
who ran this program would go home ‑‑ to the women\'s home or any other
place to participate in going to doctors\' visits.

Actually, the overall visits started out with an initial assessment and
planning program where we figured out what exactly would be the focus of
that particular what we called \"cycle\" of the program then the
implementation might take several encounters. Then you can go on to the
review of how things actually went after the goal was achieved. Then we
would repeat those cycles a minimum of four times overall, about 20
hours. We were modeling that we wanted to at least get 20 hours worth of
direct face‑to‑face interaction.

That was incredibly well accepted by participants. Not everyone could
come. People were working. Even with our flexibility that we were only
able to get about 71% of those who accepted the intervention; about 50%
of those who were eligible for the intervention, but I consider that
quite an accomplishment considering these were women who were not
seeking adult education services. These were women who were in the
healthcare system. We were inviting them to come to something that they
weren\'t ready to ‑‑ necessarily had decided already that they wanted to
do. I think that is really ‑‑ well, let\'s talk a little bit about the
important themes that came out.

Most of the focus was around medical care, family management and
economics, and education. So, the outcomes I would venture to say that
really would be important for this particular program would be how many
primary‑care visits were accomplished that would not otherwise have been
accomplished? How many specialty care visits were negotiated that would
otherwise have taken much longer and not have accomplished?

Family management economics. Things like insurance, employment, housing,
child services. All of these are directly related to the health of the
family and were a big focus of these particular encounters.

And then finally, education. A significant number, about a third of the
participants, got linked up to adult education programs. They were not
initially planning to do this. And yet the ESOL participants in
particular ‑‑ we had 100% participation with adult education programs.
So, all of these things I think are important for thinking about how do
we imagine health literacy intervention that can go after the vast
majority of adults who can benefit from adult literacy programs but are
not currently participating in adult education, formal adult education.

So, we had high participation. We linked disparate health navigation
needs and education needs. And so I would say it is absolutely possible
to link adult education and public health together, but new models are
needed. We can\'t imagine that we\'re just going to plop our adult
education format into a health setting and vice versa. The traditional
health education model or the social worker model of solving the problem
and then leaving is not going to work. We need a fusion of these two
things, I think, to work best at least in this care setting. And future
work is needed to evaluate the benefits of such a public health and
literacy collaboration.

Dr. Sandra Baxter: Thank you. Thank you very much, Ian. Susan?

Dr. Susan Levy: Thank you. My presentation is about a program that was
developed as a result of funding from the National Institute for
Literacy, National Institute of Child Health and Human Development and
the U.S. Department of Education. It\'s a process that we went through
for the last six years. And one of the outcomes that we\'re very proud
of is the curriculum that I\'m going to talk about today and give you
some background on and hopefully some interesting issues that have come
up in the very on‑the‑ground implementation of this in adult education
programs.

As you saw, it pretty much was a study and it was developed for the
National Institutes of Health and National Institute for Family ‑‑ or
for Literacy and the important thing there is it was a randomized and
control study, which meant there was an experimental design. We targeted
all the adult education populations in Illinois that were very varied in
where they were located. Some were located in community college venues.
Others were located in church basements. Others were located in
varieties of institutions across the state. As a result of that, we saw
a tremendous amount of people with different needs across the state in
many different kinds of settings, which I\'ll talk about later.

The ultimate goal was actually doing what everyone here is in favor of,
which is developing general adult literacy skills as well as improve
health related knowledge, self efficacy and potentially health promoting
behaviors. We can add onto that through the curriculum navigation skills
and such.

We started our project knowing that the world of health literacy in
public health and the world of health literacy in adult education
weren\'t hearing the same kinds of things or issues in the same
definitions. So, we looked. Literacy in the National Literacy Act is
defined very broadly to \"read, write, speak and compute and solve
problems at levels of proficiency necessary to function\". Function is a
word that we can also discuss. As Andrew pointed out, there\'s different
levels of functioning proficiently.

The health literacy in the simplest definition I could find that I was
satisfied with to just talk about briefly is \"the ability to read,
understand and act\" ‑‑ acting is very important ‑‑ \"on healthcare
information.\"

Our project was an attempt to integrate all these points of view and
that\'s where the project was born. We\'ve established there\'s a
complete correlation between low literacy and poor health. That\'s been
very well documented for many years. I will not go through each of the
slides because I know you have them and can get back to it on the Web
site.

But when you look at the idea that 42% of individuals in one study could
not understand the instruction \"to take on an empty stomach\" and when
you kind of visualize what \"take on an empty stomach\" might mean to
someone who is not understanding you, you can see the problems that
physicians have.

Healthcare costs are always important for people who are trying to get
funding and for trying to justify the need for this. I think the AMA
Foundation in 2006 ‑‑ I think this figure came from and in 2007 it even
went up, but in that year \$73 billion per year. It\'s starting to sound
like real money.

Our curriculum was put at 42 hours. It was meant to supplant the
literacy curriculum across the state in the experimental sites and they
were, as I said, randomized. The reason we chose 42 hours wasn\'t
because it was a magic number, but five, six years ago it was the amount
of hours was 35 that people could take and then retake the tape to see
if they moved up a level at the minimum. So, we said, \"Well, what\'s
reasonable and practical to go and to talk to people to allow us to come
in?\" And we said, \"Well, let\'s put together a 42 hour curriculum at
all the levels giving teachers materials that they could choose to
manipulate as they needed for their classes.\"

We did in our experimental curriculum talk about explicit instruction.
We had lessons and lesson plans that people should get through. For the
benefit of those who are researchers it was theoretically driven by some
of the social and behavioral science theories. And we were hypothesizing
that health content will make the adult education students be more
attentive, be more engaged with the curriculum leading to better
literacy outcomes as well as health outcomes.

We did a major study with individuals across the country to develop the
curriculum and we prioritized issues because we knew that 42 hours could
not cover the entire health content field. So, these are some of the
priority areas that were in and that are in the curriculum that we\'re
talking about. How to do some of these things and even an easy idea that
we think if we\'re literate adults knowing the difference between an
ophthalmologist and an optometrist. You definitely don\'t want to go
glasses to an obstetrician. So, all of these kinds of things were
discussed as part of the curriculum.

And we did this curriculum because of the experiment across all adult
education and literacy levels and we design the curriculum around
concepts of adult education. Some of the literacy skills addressed:
There were many, many more, but this gives you an idea.

A curriculum example. This was very must in the basic level in both. By
the way, we had an ESOL version of the curriculum as well as an ABE
version of the curriculum for the different levels.

Body parts people had to identify. You can\'t talk about the body until
people are able to talk about the body parts. So, very much it worked
into the science curriculum, too, if you were doing this in grade
schools.

Vocabulary practice. Some of the creative things that our curriculum
developers had to assist with and we did have professional curriculum
developers. Some of you in the adult education field may know \[Lori
Berkowitz\] and \[Lori Martin\] from the center in Illinois as part of
our team.

Here we have some forms that people had to use to fill out and constant
practice. These forms also included the idea of teaching verbs and nouns
and different kinds of issues as we went along as part of reading. We
used actual patient information forms. Medication histories, levels that
people would discuss. We had role plays. And this is very important,
too. We talk about reading and literacy and understanding and writing
materials that are simpler to comprehend and understand, but when we\'re
talking about health literacy situations determine very often if a
person is literate in that particular situation. If you\'ve never been
sick before with a certain symptom, it is very difficult to be literate
in that particular situation at that time. So, we give people some ideas
about how to talk to a doctor or how to be a patient and they switched
roles. This is one of the role plays here that you can see.

Other curriculum examples which I personally did not think of but in
terms of expiration dates. We think it\'s a very simple idea, but dates
are written in so many different ways in the United States and if you
come from Europe or another country yet in more ways. So, the idea of
numeracy plays out in very important issues when we\'re dealing with
health.

This is one of my personal favorites. It is a medicine. It could be any
medicine and dosages and labels; reading a label and answering
questions. Through the curriculum we have little test quizzes for the
individuals as well as giving them information. They were able to take a
look, make up stories. They can do this by themselves or with partners.

And the other thing we wanted to do in terms of the healthcare system
was have people determine what is emergency care, what needs do you
have? What determines an emergency? What determines where you go in an
emergency? Just the difference between a clinic and an emergency room or
a doctor\'s office or a hospital. Many people do not have that
knowledge. So, this is both reading, writing and very practical.

And then as we went through this, two of the most common topics that are
important are nutrition and physical activity. We\'re inundated with
that so we decided to add that to part of the curriculum and also the
use of common medicines, over the counter drugs and dosages. These are
part of that.

Our participants were over 2,000 people and 1,946 adults completed the
whole survey as well as the hours met, up to 42 hours. These are
participants with pretests and you can see the number of sites was quite
extensive; over 42 classes, 120 and number of adults almost 2,000.

The experimental control groups had almost exactly the number of
participants. And here you can see ‑‑ and this is something that we
found out ‑‑ the loading of the participants was very different and it
looked different for ABE and secondary education as well as the English
as a second or other language learners. The loading of the second
language learners is very much more at the basic and intermediate and
the loading of the ABE/ASE is more in the intermediate through advanced.

We also noticed as we went through this and everybody in the country
probably knows it, but it\'s worth saying again. Our populations have
changed in the last 10 years. There\'s a huge, huge influx not only of
Hispanic immigrants, but as you\'ll see later on we had 240 other
language speakers who were not Hispanic. So, the immigration waves and
English as a second language is a huge part of adult education, not just
the people who have come in through our own school systems.

The primary home language of our population in total you can see. And
here we have something that is to me one of the most important slides
because it truly, truly backs up everything everyone has been seeing.
The lower the literacy level, the lower the health knowledge. This is
just knowledge. It\'s not efficacy. It\'s not behavioral intention. This
is straight basic health knowledge across our entire population is
completely correlated by low to high. And if you can see also on this
slide the ESOL group starts much lower and even their highest does not
come close to the higher levels there.

The other caution here is we can\'t get too excited over the ASE number
either because the highest number that you could have gotten in the
knowledge score was 24. So, even at the highest level there\'s a lot of
room for improvement.

Our study after all the years ‑‑ I\'ll just give some of the basic
findings. The average post test health knowledge score was significantly
higher than the average pretest health knowledge score. This went across
every way you could segment out the data that researchers usually do on
the experimental group. The adults increase their health knowledge when
participating in classrooms using the health literacy curricula. They
also increased their health intentions and efficacy.

The most important thing for adult education was how did they do on the
test of literacy? And that, too, increased pretest to post test. So,
everything seems to work well. Everybody made gains in literacy in the
experiment on control groups over the 42 hours. In our study, though,
control teachers receive training in literacy strategies and embedding
strategies also. So, it wasn\'t all or nothing.

Data show direct and progressive association between literacy level and
health knowledge intentions in efficacy. We started to differentiate the
needs of users of health information by low literate adults. I think the
data that are important is control students showed greater health
related deficits at post tests then experimental students at the same
literacy levels. The ESOL males were the highest risk. They remain the
highest risk. Our belief is that the lower literacy levels need more
than 42 instructional hours to progress to the next literacy level.
That\'s the bad news or it\'s the reality.

While health knowledge and health related efficacy can be significantly
improved relatively quickly even within the 42 hour time. So, I think we
can do something about health literacy in a very ‑‑ more efficient way
than we really think. I think also policy implications, the curricula
needs to differentiate between our English as a Second Language students
and regular ABE/ASE students. And there needs to be a greater focus on
males in general. We find this in the healthcare system and in public
health as well, but maybe we can combine our resources and put it
through in literacy as well as health. I would like to thank you for the
time.

**Dr. Sandra Baxter:** Thank you. Well, you\'ve put such interesting
issues on the table. There were a number of things I would like to take
up, but actually we have a number of questions from our viewers. So, why
don\'t we go to the questions right away?

First, we have Julie from World Education who would like to know: Given
that the NAAL shows that those with lower literacy levels use the
Internet less for finding health information, how can web based
interventions and other technology be best used to address health
literacy?

**Dr. Andrew Pleasant:** Well, I\'ll go. Hi, Julie. Everybody knows
Julie, so it\'s okay to be personal. That\'s something about the NAAL
that astounds me; 80%, I believe, was the number of people at the below
basic level said they\'d never use the Internet for health. I have to
say I take that as the one thing I take with a real grain of salt. I
don\'t know why people said that because in my experience when we did
work in adult education classes with people with low literacy they were
incredibly excited about the Internet. They might not have been on it
before, but once they had the chance they jumped at it.

And now with the availability in public libraries and in some ABE
classrooms more and more the Internet is reaching into more people\'s
lives in this country in particular. I think that 80% is going to change
rapidly if it was necessarily true in the first place. I just don\'t
necessarily understand that data point, but I don\'t think that we
should make future policy based on that given the increasing reach of
the Internet.

**Dr. Ian Bennett:** I would just add to that. If you look at the NAAL
data the Internet is one of the range of sources of information that\'s
much more limited among adults with lower literacy. So, it\'s not just
‑‑ its seems to be a general pattern rather than, for example, going to
someone to talk about something they\'d be less likely, those same
folks, to talk to another person to get information. So, it\'s a general
\[whittling\] down.

I also wonder if there might be a difference, an age specific difference
based on the interest. The largest group of folks are older, but it may
be ‑‑ your experience, for example, is with younger folks who are
perhaps more willing. And we certainly found that when you get someone
into a class and there\'s a computer in front of them they\'re very
interested in navigating the Internet and it brings up, of course, all
kinds of issues. I think it\'s more ‑‑ Julie, I think it\'s more about
getting people into a setting where they can use the Internet than
anything else.

**Dr. Susan Levy**: I would add to the point that the idea of the
tipping point and the digital divide. I think you have to look at the
NAAL data as a few years old because of when it was collected and things
have changed so fast so quickly. And you cannot exclude the use of cell
phones now and all these smart phones and things. It\'s just a changed
world.

**Dr. Sandra Baxter:** It really is. That\'s an excellent point. A
question here from P.M. about health disparities. What role does culture
and language play in building health literacy skills of African
Americans and other racial and ethnic minorities?

**Dr. Ian Bennett:** Well, I think Andrew mentioned earlier how really
critical it is to be very mindful of the particular context that you\'re
working; whatever the public health and adult literacy setting you\'re
going to be moving in to. We see over and over examples of large
projects that do not pay attention to that and I think suffer as a
result of it.

But culture and other socioeconomic issues are critical and I would just
step right in right in line with Andrew\'s point and Susan I\'m sure you
agree with this too, that you\'ve got to have the folks that you want to
work with part of the process to make sure that we\'re not just
inventing programs in our offices that we decided that we\'re going to
push out there, but rather have people ‑‑ folks who are really from the
community and can identify things that are either going to work well or
not well. That would be my main response to that question.

**Dr. Andrew Pleasant:** I would just add language is one of the most
important ways that we learn culture. So, to separate them is almost an
untruism because they\'re so intimately bound up with each other and the
only way ‑‑ I think we\'re going to reiterate this point multiple times
to make sure that the language that you\'re using matches the cultural
world of the people you\'re trying to reach is to ask them and bring
them in and have them check it because from the very beginning of our
lives language and culture come together. We\'re taught that in school.
We learn the rules of culture in school through language. If we choose
to not pay attention to those rules we get expelled and the problem
compounds itself from that point forward in life.

**Dr. Ian Bennett:** One example just to add one thing that comes to
mind is the ABE ‑‑ there was a very nice program. There are examples of
very nice programs in which learners, adult learners are actually
integrally related ‑‑ involved with the development of curriculum. I
think that\'s a great way to avoid making inappropriate curriculum.

**Dr. Sandra Baxter:** Good. Carolyn from CDC has sent us a question.
She\'d like to know, Andrew, you mentioned that health literacy may be
put into an accreditation scheme by the Joint Commission. Carolyn would
like to know what that looks like.

**Dr. Andrew Pleasant:** So would we all.

**Dr. Sandra Baxter:** What tangible practices aside from plain language
and cultural competency are or should be included in health literacy
improvement? What specific policy changes do you think need to occur to
improve health literacy?

**Dr. Andrew Pleasant:** There\'s a question for you.

**Dr. Sandra Baxter:** It\'s one we could take all day with.

**Dr. Andrew Pleasant:** I don\'t think any of us are on the Joint
Commission\'s Health Literacy Task Force. I\'m not sure, though, so we
can\'t really speak for what their plans are. They did put out the white
paper on health literacy and I believe there\'s currently a call for
participation in developing those accreditation standards. I nominate
myself just to throw it out there. I want to see what they come up with.

It\'s the same ‑‑ they\'re going to face the dilemma that I just
described. Are they going to keep it to a very narrow and simple idea of
the health literacy is just about reading and writing or are we going to
open it up and say a hospital is a living, breathing institution and
health literacy permeates through it so that you have to figure ‑‑ what
we did with my students we interacted with staff. We interacted with the
building itself and we found health literacy barriers. Now, that would
be the first step, but far from the last step. There\'s a lot more that
can be done within the hospital setting from a health literacy
perspective and I would hope the Joint Commission sort of takes an
aggressive position on this.

Dr. Susan Levy: It\'s a very, very difficult issue just, for example,
with confidentiality being a greater ‑‑ of greater import today and of
greater structure in hospitals and patient relationships. What kinds of
interactions do you measure that are appropriate in the terminology of
what is patient confidentiality? These are very, very interesting times
we live in, but I think the biggest policy issue that needs to be
addressed and this has to do with the insurance industry, Medicare, you
name it, is that health education or health literacy needs to be part of
things that physicians, nurses, nurse practitioners or the offices where
people are dealing get paid for.

As far as I know the only educational interaction that is absolutely
paid for by insurance at this point in time ‑ that I\'m sure of anyway ‑
is diabetes. I\'m not sure, Ian, maybe you can comment on others, but I
know that if you were in a physician\'s office you wouldn\'t be paid for
the time you spent educating your participant in their own healthcare.
So, that\'s probably the biggest policy thing and the biggest policy
block is in fact the confidentiality issues. So, I\'m sure the Joint
Commission is probably toying with this as we speak.

**Dr. Ian Bennett:** As a suggestion, since the question was asked,
being on the committee in our hospital at the University of Pennsylvania
my recommendation would be to require a process and some kind of self
auditing process in which the nurses, for example, at a particular unit
are reviewing what is the signage in a particular area. What are the
materials that are being handed out? A process that makes all of the
members of the staff and the physicians as well at every level really
aware of the issues. And it becomes more of an ongoing part of CQI or
Continuous Quality Improvement source of activities.

**Dr. Andrew Pleasant:** I think the important question is who does the
monitoring? I think, again, as we said who better to help decide what\'s
right and wrong about the hospital than the people who the hospital is
supposed to be serving. As I often say about myself I might be an expert
in the study of health literacy, but the real experts in health literacy
are the people that struggle through these issues in their lives every
day. We need that voice in this process in some fashion.

**Dr. Sandra Baxter:** We\'ve had a number of questions from viewers
about research. This one seems to be coming through a bit. What kind of
research is most lacking? How can we fund research that addresses multi
sectors, i.e. literacy and the health fields and that will have an
impact on different sectors?

**Dr. Ian Bennett:** I think each of us probably has a slightly
different idea about which is most lacking. I certainly ‑‑ the reason
that I presented my work in my interest in maternal child is that\'s an
area that is a huge use of health services for anyone under the age of
50. For women, that is by far ‑‑ maternal child health is the large user
of services. If you include pediatric care then that really takes up a
big chunk of health service dollars. I would encourage more
investigators to be involved with literacy and health in that particular
area.

**Dr. Sandra Baxter:** Okay.

**Dr. Susan Levy:** I have a public health perspective that health
literacy is a part of health promotion and disease prevention across the
board and through the life course. My fear is that health literacy gets
completely co-opted by patient care and the healthcare system when most
people spend more of their health life taking care of themselves and
their families without the healthcare system and trying to maintain good
health and disease prevention and activity. So, there\'s a tension there
within funding streams to make the case for health literacy based on the
deficit model.

This is what it\'s going to cost you if in hospitalization, which is
absolutely true. But on the other hand the deficit model also works for
health promotion and disease prevention in the well care model.

Dr. Andrew Pleasant: I think I will not disagree, but extend the answer.
We spend in health literacy perhaps an inordinate amount of time
identifying what it is that people can\'t do and we\'ve spent very
little time understanding what it is that they actually can do with the
health literacy skills that they have. We\'ve been focused on the below
basic level, for example, and there\'s really nothing to counter the
argument that the health effects that those people are experiencing at
the below basic level might not be about health literacy. That might be
the base line healthcare that you get in the U.S. So, we really do need
to look at the flip side of the coin. Exactly how does health literacy
work when it works?

**Dr. Sandra Baxter**: Ariel from Emory University says that she finds
Dr. Levy\'s study interesting in assessing knowledge and intention
change. Do you know of any studies that have been done to assess
behavioral change?

**Dr. Susan Levy:** One of the reasons we chose efficacy and intention
as some of the behavioral models that we looked at in our work was many
of the health promotion and disease prevention issues that we would talk
about. For instance, when was the last time you did go to a physician
for a physical or something like that as an example in any of these
areas? Maybe a once a year, once every other year, once every 10 years
if we were talking about colonoscopies for some. So, we would never be
able to measure some of those behaviors in a 42 hour one semester
essentially study. So, I think that\'s the same problem that others have
in measuring some of the long‑term goals. So, in answer to your
question, yes and no, but those are the reasons why you don\'t find too
many yeses.

**Dr. Ian Bennett:** There is work specifically in the context of
adherence to medical recommendations. So, while there\'s also an
association between non‑adherence and lower literacy there\'s also ‑‑
there are also randomized controlled trials around diabetes in
particular and congestive heart failure that have shown an improvement.
In fact, very interesting work. One author among others showing that for
an intervention that addresses some of the obstacles that we imagine are
faced by adults of low literacy with congestive heart failure, it
actually seems to work better for folks with lower literacy than those
with higher literacy.

So, it appears that one interpretation is that lower literacy actually
creates a relatively fixable barrier for adults who have low literacy,
whereas those who are not adhering well but have higher literacy have
other issues going on that weren\'t addressed. That\'s taking the data a
little bit further than maybe Mike would like me to do. There are some
interesting things about behavior change within adherence.

**Dr. Sandra Baxter:** That is interesting. Ian, you mentioned earlier
the Commission\'s Health Literacy Act. One viewer, Laura, would like to
know if you\'d give the reference, the full reference to that or if you
could repeat that reference again for her.

**Dr. Ian Bennett**: I don\'t think it was me.

**Dr. Andrew Pleasant:** I think I did. The Health Literacy Act ‑‑ it
was initially labeled the Health Literacy Act of 2007 sponsored across
the aisle, but I don\'t believe there\'s been any progress given the
current sort of where we\'re at in the political cycle in this country.
As a matter of fact I\'m fairly sure that it was introduced to the
committee that both Clinton and Obama are on. So, it was clearly not
going to go anywhere for a while. I think now we just have to get past
the next election and hopefully there will be renewed interest in
pushing that forward.

**Dr. Sandra Baxter**: You know, we started off our discussion talking
about the differences in definitions for health literacy. Here\'s
another definition kind of question for you. \[Audrey\] would like to
know ‑‑ let\'s get us all on the same page when you say \"adult\". When
you say adult literacy, what do you mean? And also, are all of us
lifelong learners?

**Dr. Ian Bennett:** Well, for habits and for convention we talk
about ‑‑ we say someone has basically from an epidemiologic point of
view we start thinking about 18 year olds as being the kind of cut off.
But for the now, for example, we start at 16 and it\'s a national
assessment of adult literacy. So, there are a lot of things we could say
about that.

There are different kinds of large assessments of cognitive development,
for example, that have plateaus that sort of start around 16. It\'s
developing up until then and it\'s sort of the same score straight
across until 65 or so, around there, when it starts to decline,
unfortunately. So, I think that unfortunately what I think of when I
think of adult literacy is even if it\'s someone who\'s still in school
or still developing their literacy I do think we\'re all adult learners
and that\'s why I think there\'s so much promise for the link between
adult education and adult literacy ‑‑ adult education and public health
and other health interventions.

I think one of the things that\'s really great as compared to
educational attainment which is a fixed variable basically. When someone
is 19 it\'s how far you\'ve got by that point. Right? And that\'s pretty
much it. Whereas literacy is a skill that really can be developed. The
data we\'ve seen here ‑‑ maybe health literacy can be developed a little
bit faster, more efficiently. There\'s just lots of promise and we
shouldn\'t be cutting people off based on the artificial age.

**Dr. Susan Levy:** I did have an artificial age cut off. We had, as
everyone knows, had to go to our institutional review board so we
defined health literacy in our study as 18 and above. It went from 18,
just a few people at 18, to a few people around their low 70\'s; I think
72 was our oldest person. Most of the load of adults were somewhere
between 25 and 35.

**Dr. Sandra Baxter:** Okay. Actually, that\'s a wonderful segue into
the next question. A majority of our trainings and research focuses on
that of the individual ‑‑ focuses on the individual\'s role. What are
your thoughts on how to best improve health literacy from a public
health perspective, particularly focusing on defining standards of
practice and/or specific educational competencies? So, thinking about it
from a systems approach.

**Dr. Andrew Pleasant:** Well, there are competencies for public health
education that begin to address health literacy, but much like medical
school curriculum they haven\'t fully embraced the idea yet. There\'s an
accreditation scheme with a CHES, a Certified Health Education
Specialist, which should address health literacy, but I believe there\'s
only one question that you could say actually pertains to health
literacy. So, from an institutional and accreditation perspective
there\'s a lot to be done.

In my trainings that I\'ve personally given to public health departments
I find that I tend to be the first person who\'s spoken to them about
health literacy. It\'s not vested in that sort of academic background
yet to the level that it needs to be, but that\'s as true for clinical
and medical schools as well. So, they both have a long way to go.

But it\'s not just departments of public health that deal with public
health. There\'s a lot of things we can in K‑do an education, college,
advanced degrees studies, other technical training programs to kind of
alert people to the forces that are in society that affect their public
health.

One, for example, now the U.S. is one of two countries that still allows
direct to consumer advertising. That is a huge impact on the
population\'s notion of public health. People have been given no skills
to sort of weave through that. And I will not get on a soapbox about
that.

**Dr. Susan Levy:** The Society for Public Health Education, which
administers the CHES accreditation actually for many years, has been in
what I would call the broader view of health literacy. One question on
the CHES exam does not really reflect the very, very active role that
Sophie has played in this for many, many years. This is the place where
the public health ears ‑‑ you hear one definition and it kind of negates
what isn\'t being done, but there is a huge amount that has been done.
Sophie has done a lot of work with the disparities education and making
the behavioral sciences more and more a part of health promotion. So,
it\'s there, but it isn\'t in the same language that we want to kind of
coalesce it in.

**Dr. Andrew Pleasant**: It\'s a \"yeah, but\....\"

**Dr. Susan Levy:** No, it\'s not a \"but\"; it\'s there. We\'re talking
about your language and our language which is a problem we can\'t solve
in one panel.

**Dr. Andrew Pleasant:** If you could highlight it in the accreditation
scheme it would be helpful.

**Dr. Sandra Baxter:** Dr. Levy, Greg from the Florida Literacy
Coalition would like to know if you feel there is something unique to
the topic of health literacy that allowed for the literacy skills
development in your experimental group. Do you feel that similar results
would apply in other areas of theme‑based instruction?

**Dr. Susan Levy:** I don\'t know. I don\'t know. I think that health is
always a very engaging topic because everybody always has health issues
or someone in their family does. So, it makes for people to be
interested. One of the things that I would encourage though that we
found out. Due to research, we try to implement our curriculum all in a
row and get it through in one semester. That\'s the only way we could
measure.

But in reality we were told by the adult education teachers that
integrating it would be far better for the adult learners with civics
and math and other issues like that because it would keep their interest
even more. So, I don\'t know the answer to the question whether you do
it. But I do know that keeping track of what you\'re teaching and having
a road map for any curriculum is just good educational practice. So, I
think that would strengthen what you would get, but I couldn\'t say for
sure.

**Dr. Sandra Baxter:** Another question that\'s interesting that\'s
coming up is: What has been the role or is there a role for the faith
community in advancing health literacy and improving health literacy?

**Dr. Ian Bennett:** Yeah, well, of course. We want all interested
parties and the faith community, of course, has long standing interest
in the health of the members of the community. There are areas where
sometimes there are difficulties with crossing certain kinds of
boundaries around health, but there\'s so much out there that everyone
can agree should be addressed that there are partners on both sides of
the health world and the faith world that can be found. And I just
encourage people to seek them out for particular projects. It need not
be a topic that\'s sensitive to a particular community. There\'s lots
out there to be bitten off.

**Dr. Sandra Baxter:** You know, a number of our viewers want to hear
more about your opinions about collaboration and how collaboration
between the health field and the literacy field can be advanced. In
particular, we\'re getting questions around the issue of how can
literacy programs sell the value of health literacy to the health field
and encourage that collaboration?

**Dr. Ian Bennett:** Well, at this particular moment I think we\'re kind
of early on in developing this. I think that as there is actually
literature that comes out on some of the studies that we\'ve been
talking about it will be easier, at least from the health world, I\'m
going to want to see ‑‑ I\'m putting myself in another person\'s shoes
‑‑ I\'m going to want to see how is this going to work? How is it also
not going to take away from what I\'m already trying to accomplish?

So, I would encourage adult literacy folks to approach public health
organizations or public health ‑‑ the local Department of Public Health
and ask is there someone working on health literacy? We\'d like to
participate. The same way with particular hospitals or community
hospitals. They\'re going to be directed to someone and I would
encourage them to use the reports that are already out there; the
National Assessment of Adult Literacy and another very helpful thing the
JCHO white paper. It\'s not an actual requirement yet, but you can argue
you\'re getting in on the ground floor.

What can they do that\'s actually going to work for the two
organizations as usual? How do you collaborate in a way that will not ‑‑
it\'s always value‑added and not taking away. Can you bring resources
together? We have bodies of people we would like to interact with, the
patients that you have. We can do a class. We can have an instructor
come and do a class and likewise for the physician\'s medical side,
public health side, they are trying to get to learners and perhaps they
could do something at the adult education sites. Then they can grow and
go both ways. That\'s the way I would say from my experience those edges
where they most naturally come together is the way to start.

**Dr. Sandra Baxter:** Good ideas.

**Dr. Andrew Pleasant:** The few themes that seem to resonate with
people as they begin this discussion. If let\'s say you\'re from the
literacy community approaching the health community and those three that
really stand out and we have data to support this would be reduced
costs, improved health outcomes and lower liability, which is something
we haven\'t talked about at all. So, those three can open the door to
begin that discussion. There is enough data in the reports that Ian
mentioned and elsewhere that say, okay, we have a really good idea that
this is going to be the outcome. Let\'s see what we can do that fits us.

Another area that is often not discussed, there\'s I believe, a very
perfect marriage between health literacy workforce development and
hospitals in communities especially those that might be serving a lower
income neighborhood. Often the work force comes from that neighborhood
and you can partner around those issues to do a work force development
project around health and help people move up in their employment
opportunities within the hospital itself. So, there\'s really a variety
of ways that these organizations can work together and most of them have
honestly not been that well explored yet.

**Dr. Susan Levy:** I would just like to say that the easiest way to
think about any of this is a very targeted approach because health
literacy is very much specific oriented. It might be a life course
event, child bearing. It might be end of life. It might be different
educational opportunities that people see as very important during
certain stages of their life. These offer inroads to getting your foot
in the door with an organization. If you can come to them and you can
light on a joint topic, not the whole of health literacy, because
that\'s too much to take.

**Dr. Andrew Pleasant:** Or a joint audience. You might say, \"We both
serve this population. What have we missed that we\'re not doing
together that we can magnify our results and then health literacy
becomes the glue that holds the two together?\"

**Dr. Ian Bennett:** One other suggestion; I\'m sorry. I think there are
a couple things that came to mind. There are actually programs out
there; one I\'ll pitch ‑ the Baby Basics Program, which there are
others, too. But a really wonderful program that\'s really set up for
prenatal care. There are many prenatal care units that would love to ‑‑
just don\'t know about it and they would love to incorporate the
material. There\'s a whole component of that that includes opportunities
for adult literacy education. Then you have the adult education site
going to a place and saying we have this material. We\'d love to partner
with you. Boy, I think that would likely flourish.

**Dr. Andrew Pleasant:** I think I can just hear the \"what to expect
foundation\". That\'s great.

**Dr. Sandra Baxter:** We\'ve talked about the faith community. We\'ve
talked about Adult Ed programs, health institutions. Here\'s a question
about libraries that we haven\'t addressed yet. Sabrina Kurtz‑Rossi from
the Medical Library Association says, \"Public librarians and
hospital‑based medical librarians are increasingly involved in health
literacy work. Many public libraries offer adult education and commonly
help patrons find the health information they need. Medical librarians
are increasingly working with patients to help them learn the skills to
search the Internet for accurate health information.\"

My question is for all three presenters and this is it. How do you see a
librarian being of help? What role might they play in supporting the
health literacy education programs you\'re involved with?

**Dr. Andrew Pleasant:** How long do we have?

**Dr. Sandra Baxter:** We have about five more minutes.

**Dr. Andrew Pleasant**: Just quickly. Sabrina, there\'s a ton ‑‑
there\'s a lot of ways that this can be done and I think everybody knows
it. Here\'s just one example that I currently found quite fascinating
that\'s starting to emerge in the place I\'m working and that\'s this
idea of book clubs targeted at different sectors of the population. The
linchpin of the relationship was in fact the librarian because that\'s
where the books have to be housed and that\'s where the knowledge of
sort of how the book club can work. The possible books that are out
there. All of that knowledge and more is there, but then you still need
the healthcare system to come in and say, \"Okay, you\'ve read a book
about\" ‑‑ I\'ll pick a topic ‑‑ \"diabetes, but we need an expert to
say here\'s diabetes in the context of this book.\" And then what
happens when it works is in the \[Frarian\] tradition people read the
book and then they read their life. They read the word and they read the
world and they made the connection between the two. The librarian was
critical in that relationship.

**Dr. Sandra Baxter:** Any other thoughts?

**Dr. Ian Bennett:** I would just encourage librarians across the
country to think about how they might be able to host some kind of ‑‑ or
facilitate some kind of interaction. It\'s a community resource that
really can include various kinds of bridging of the health worlds and
the reading education worlds.

**Dr. Susan Levy:** I think ‑‑ I had an experience up in Wisconsin. NIFL
sent me to speak at one of the meetings in Madison. One of the people
who was very active in the meeting was in fact a librarian. I believe
Verizon is the funder for a lot of the literacy things. She had run
quite a few adult and health literacy segments at her library and was
encouraging a lot of people to get involved at that level. So, I don\'t
know how national it is or how Verizon actually interacts, but obviously
Andrew is totally correct.

**Dr. Sandra Baxter:** Well, Susan, Ian, Andrew, thank you so very much
for an exciting conversation; very informative discussion. To our
viewers, I want to thank you for tuning in today. We\'ve received many
more questions than we have an opportunity to answer right now, but we
will take these questions and we will develop the responses to them from
our panelists and we\'ll post them on the institute\'s website along
with the presentations at www.NIFL.gov.

Again, I want to say thank you to my wonderful panelists for your
informative and thoughtful discussion that you\'ve generated with our
viewers today. And I want to thank you, the viewing audience, for
joining us today.

This is Sandra Baxter for the National Institute for Literacy. Thank you
for joining us.