**The Health Literacy of America's Adults: Results from the 2003
National Assessment of Adult Literacy**

**August 29, 2007**

**Event ID: 92519**

 

Dr. Sandra Baxter: Good afternoon. And thank you for joining us today to
discuss \"The Health Literacy of America\'s Adults.\" My name is Dr.
Sandra Baxter and I am the director of the National Institute for
Literacy. The Institute is hosting today\'s webcast and it is being
brought to you live from Washington DC. The Institute, a federal agency,
is charged by congress to provide national leadership on the issue of
literacy across the lifespan. An important part of our mission is to
serve as the national resource for adult literacy programs and as the
clearing house for research and resources on reading, reading
instruction and adult literacy. We are pleased to host this forum on the
results of the 2003 National Assessment of Adult Literacy, also known as
the NAAL. This assessment is the first to look at our nation\'s progress
in adult literacy in well over a decade. This report was conducted under
the auspices of the National Center for Education Statistics and the
Institute is pleased to be working with NCES to share these findings.

The NAAL provides us with important information about background factors
associated with literacy and the skill levels of America\'s adults. The
study also offers information about the literacy needs of English
language learners. More than a year ago we began a national conversation
around the NAAL and these important findings. Today we continue that
dialogue as we address and engage our expert panel on the NAAL\'s Health
Literacy Results.

The NAAL incorporates the definition of Health Literacy that was
developed by the Institute of Medicine and the US Department of Health
and Human Services. That definition is 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 is also and can be an issue for
well-educated adults to know and understand health information needed to
make everyday decisions. Making good decision, health decisions, depends
on having a high level of reading and comprehension skills. Just think
about the last time you picked up a health magazine or pamphlet while
sitting in your doctor\'s office. Or a decision you had to make when
buying on over-the-counter medical 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 look forward to
an engaging discussion today about the health tasks for the 2003
assessment, how well adults who were tested performed, and what this
means for our general population.

We are pleased to be joined by two national experts this afternoon; Dr.
Sheida White is here from the National Center for Education Statistics.
She is the project officer for the NAAL. And we are also joined by Toni
Cordell, who is an adult learner who recently served as an expert panel
member on the joint commission. The commission is an independent
organization which accredits and certifies health care organizations and
programs in the United States. Toni is also a nationally known speaker
about health literacy and she shares many of her own experiences in this
area with us.

We are very sad to announce that Dr. Ian Bennett, an Assistant Professor
at the University of Pennsylvania School of Medicine, is unable to join
us today. He has had a family emergency and he has our best wishes and
good thoughts as he is tending to that.

Again, welcome to our panelists and to you, our online audience. Now we
are going to begin today with Dr. Sheida White who will explain the
findings of the health literacy assessment. Sheida, welcome.

Dr. Sheida White: Thank you Sandra. Good afternoon. I am pleased to be
here today and share findings from the Health Literacy Component of the
National Assessment of Adult Literacy. This is the first national
assessment, large scale national assessment ever that was designed
specifically to measure health literacy. So we are all very, very
excited at the results.

Ian, if you are watching this, I wish you best of luck.

In this slide I am going to talk about a few topics that you can see
here. My focus will be on the results and how literacy is distributed
across various groups and subgroups of adults. The first bullet, we are
assessing literacy, English literacy of US adults. I emphasize the word
English because there are a lot of people out there who are highly
literate in other languages but they are not, but not necessarily in
English. We have a nationally represented sample of 19,000. Of these
19,000 adults approximately 18,000 live in households and about 1,200 in
state and federal prisons. The last bullet, we have four scales. We will
be able to, indeed we have reported trend data, we reported changes in
literacy for three of the four scales, prose, document and quantitative.
But health literacy as you know was the first time that we administered
it in 2003 and so we have to wait for the future assessments to see
changes in performance.

Next slide is our definition which is pretty straight-forward. It is
really not that different from our definition of \[general\] which is
prose, document and quantitative literacy. The only difference here is
that we are going to, the reading and comprehension of information is
applied to health-related material as opposed to general material.

In the first slide, first bullet, in 2003 we had a total of 152 items.
And of these 152 items, 28 items were health-related. In fact they were
designed to be health-related. And 2 of these 28 came from 1992 so we
had 26 brand new health-related items in 2003. Just to give you examples
of what we mean by clinical, prevention and navigation of health care
system, an example of a clinical task would be for example filling out a
patient form. An example of prevention would be following the guidelines
for age related preventive measures like having annual mammograms if you
are over 40. And the navigation of the health care system, an example of
that would be understanding for example what a health insurance plan
will pay for.

I do want to remind the audience out there that this assessment is an
assessment of written and printed health-related materials. It is not an
assessment of comprehending all language or speaking. It is also neither
an assessment of how much you know about health issues like what to do
in case you have high blood pressure. It is not an assessment of whether
or not people can understand technical medical terms or anything like
that.

Next slide gives you an example of a health item. We classified this
into our prevention category. It also is an assessment of document
literacy. As you can see here the question asks participants to copy
three food sources that contain Vitamin E. And we considered the answer
to be correct if the participants listed any three of the following
foods, I don\'t know if you can see them but I am going to read them to
you -- wheat germ, whole grains, eggs, peanuts, organ meats, margarine,
vegetable oils or green leafy vegetables. This assessment task is used
and is on our website.

I do want to take a moment and talk about a request that I hear coming
from you very often. And that is requests for the 28 health literacy
items. I know it is very important to your work and to your research to
have these items but there is a problem for us releasing these items.
And here is the problem. It is not that we are trying to be malicious or
anything like that. Whenever you call and we say no we can\'t give it to
you, the reason is that these 28 health-related items are embedded
within blocks. We have blocks of items; each block has about 10 or 12
items. And so there are about 2 or 3 health-related items embedded in
these block of items. There are 13 of those. 7 of these blocks were
developed for the 2003 assessment and nearly all, 26 of those 28 items
are in those 7 new blocks of items. Now in order for us to establish
trend to the future now, the (inaudible) tell us that we need to have at
least 6 blocks of items. So that only leaves one block for us to
release. We need to keep those, if we were to release all of the items
including the ones in the new 6 blocks than we can\'t turn around and
use them again in the next assessment. And so here is what I think I can
do for you. I can, I have already decided which block of item was
contained, health literacy items, most of the health literacy items and
I am suggesting that we release that as block number 8. Another thing is
for you to come to my office in Washington if you like and look at
items. You can come to my office and look at the items but you won\'t be
able to copy them or you won\'t be able to take those with you, but you
can look and see what they look like.

And then the third thing is to go on our website and look at the
released health literacy items that we have on our web -- there are 6 of
those I believe. Now here is if you wanted to do that, go on our
website, here is what you can do. Here are two print screens. The one on
the left is the NAAL, what they call Test Questions Tool. It is on our
website. Now this tool will give you access to the questions and to the
answers from the 1985 and 1992 assessments that are released to the
public. We have a total of 109 questions on our tool. That is a lot of
questions in this question tool, and as I said, including 6
health-related items. So if you have any difficulty accessing these
items please feel free to send me an email and I will guide you,
<Sheida.White@ed.gov>.

So we can move on to the next, oh let me just stay on this for a moment.
I think it is a little bit hard for you to see the second slide, but if
you, let\'s say you wanted to look at the items that I just presented to
you earlier about Vitamin E, look at the slide on your right. You will
find interesting information about this particular item. You will find
out what year it was given. You would find out what other literacy scale
it is classified as, is it prose, document or quantitative. You can find
something that we call Task Demand. What is the cognitive and the
(inaudible) requirement of this particular task? And you will also find
out what percent of people answer that particular question correctly. In
this case, I can\'t see, it is 60% or something like that. So you get
all of that information for each of those 109 items that are on the
website.

Okay. Did they get to see the header for these slides? I guess they do.
In this case, the title is Health Literacy and Literacy are Closely
Related. That is what this slide says.

Dr. Sandra Baxter: They do see the header.

Dr. Sheida White: They do see, okay, thank you. Now health literacy is,
as many of you are aware, is very closely related to prose, document and
quantitative literacy. And that is because all of these forms require
the ability to use printed information to function in society. So in
other words, health literacy is not a distinct set of tasks. It is not a
distinct set of materials or a set of skills. However, there is a,
despite the high correlation between prose, document and quantitative
and health literacy, which is I believe in the 80s, the correlation is
not perfect. And that suggests to us that there are some additional,
there are some conceptual differences among the scales. And we see this
also with prose, document and quantitative, there is a high correlation
actually between prose and document literacy, the correlation is as high
as in the 80s, but we don\'t say that document literacy is the same as
prose literacy in the same way that we don\'t want to say that health
literacy is the same as document literacy because they have high
correlation in the 80s. So I try to articulate some of the differences
that we see between health literacy scale and other scales.

The health literacy items, they have a lot of health-related vocabulary.
And of course every vocabulary has an underlying conceptual
understanding and knowledge about; it is like a schema that is much
broader than the vocabulary itself. And these are common health-related
vocabulary. They are not highly technical. But we considered within
common range things like diabetes or even hypertension. Then another
thing that is specific to these items is that they require understanding
of the genre of the structure of health-related materials, for example,
health insurance forms. There is some commonality across health
insurance forms even though they are different. And also the workings of
the health care system, for example understanding the notion of co-pays.
So that is how we think the health scale is different from the other
scales.

So let\'s go to some of the interesting results. I have selected a few
results that I thought you would be interested in; this doesn\'t exhaust
all of the results that we have. So let\'s go to the first slide and
here this is a little bit complicated so I am going to take you though
it because it covers a lot of information here. So let\'s just focus for
a moment on Below Basic in health literacy. This slide shows that 13% of
all adults and by 13% I mean that 10% in the Below Basic and the 3% who
took the supplemental assessment. This is what I call 13%. These are the
people in Below Basic in Health Literacy, that 13%. And this translates
to 30 million, it is 13%, it translates to 30 million adults who are in
Below Basic Health Literacy. That is a large number.

Now this 3% are the adults, as I said earlier, they are at the bottom of
the Below Basic Health Literacy level. So these are people who did very
poorly on the NAAL core assessment so we had to \[route\] them so that
they can take the supplementary assessment. So this 3% represents 7
million adults. And then we had another 2% which represents 4 million
adults who couldn\'t take the assessment at all. We have interviewers
who are actually bilingual in English and Spanish and then they go to
these homes and if they cannot communicate with a person about their age
or education or anything like that in English or Spanish then the case
is closed. There is no way that we can work with them. So that is what
the 2% represents. So all together we have 11 million adults or 5% we
call Nonliterate in English.

I would say that there is another 1% that you don\'t see here, people
who had mental or cognitive disabilities and we did not want to include
those categories in the nonliterate in English because we don\'t know,
they could have been able to read, so they are not included in the
results. Actually the results that you are going to see today, they do
not include the nonliterate in English category at all, the 5%.

Okay, now let\'s see the distribution of health literacy of American
adults in all of the levels. So as you see here, the majority of adults,
that is 53% have intermediate health literacy. We have 12%, an
additional 12%, who had proficient literacy. In other words you can say
that 1 in 9 adults is proficient when it comes to health literacy. One
way to think about it. 1 in 9 adults is proficient in health literacy.

Among the remaining adults, 22% had basic health literacy and 14% had
below basic health literacy, which as I said earlier translates to 30
million adults who have difficulty -- these are the people who have
difficulty understanding and using written health information with any
accuracy or consistency.

Okay let\'s move to the next slide. I should have said nearly, I said
approximately, it is really nearly because it is actually 77 million. It
is nearly 80 million adults may not be able to successfully answer those
questions. they may not be able to interpret an over-the-counter drug
label; they may not be able to know when a child should receive a
vaccine from a chart. They may not be able to use a body mass index, the
BMI chart. When I said they may not be, what I want to say is that they
have less than 2 out of 3 chances of being able to successfully respond
to this. That is what 67% means, 2 out of 3.

Okay. Next slide shows you how adults -- this is very interesting. This
tells you how adults with Below Basic health literacy are different from
adults in the population as a whole. So the first column, there is the
percentage in the health literacy below basic level. So for example, 51%
of adults in the below basic health literacy did not graduate from high
school. So education is a very strong correlate of literacy based on
this. Now the second column shows you representation in the general
population. So adults who did not graduate from high school are 15% of
the entire population. You can see the difference in there. So adults
who did not graduate from high school are much more over represented in
the Below Basic category of health literacy.

The next slide, again, as you might expect average health literacy
increases with each now, we see each higher level of educational
attainment. In other words, as the level of education goes up, the level
of proficiency goes up and the level of below basic goes down. You can
see that beautifully in this chart from top to bottom. So among the
adults who did not complete high school, the first row, 49% had below
basic health literacy compared to 15% as I said earlier who ended their
educations with a high school diploma, below that.

Now let\'s for a moment look at the college graduates. Not all college
graduates are in a proficient level either, far from it. Among those who
completed four- year degrees, for example you see 13% are actually in
basic and below basic, 10% in basic, and 3% in below basic in health
literacy. 13% of people with four-year college degrees are either in
basic or below basic when it comes to health literacy. Now one thing I
want to remind you of is when we talk about college graduates, we are
not talking about necessarily about recent college graduates. These are
people who could have graduated maybe 40 years ago, entire population.

This is very important because this got a lot of coverage in the news
when we talked about education and literacy. The relationship between
education and literacy is a very complex one. The immediate inclination
is to think that if you have more education than you are going to do
better on this test. And you are going to have better health, improved
health. I guess that is what I am really thinking about, the
relationship between education and improved health. But that may not
necessarily be the case. And I am hoping that some of you out there that
are researchers are going to look into this a little more carefully.

What are the, is it possible that maybe people who have poor health have
low health literacy and not necessarily all the other way around? Or
could it be related to income or other factors? We need to explore these
issues and we have not done this and NCES and I am hoping that some
secondary analyst will explore these issues further to see the
correlation, to try to understand why is there such a strong correlation
between education and health literacy.

Now let\'s look at the next slide. From this slide you see that
Hispanics have significant, I should say not Hispanics but I should say
people who speak Spanish only or that speak Spanish with another
non-English language; those individuals have significant health literacy
challenges. 55% are at below basic and 22% are at basic.

Let\'s look at the next slide which talks about the relationship between
self-assessment of overall health and health literacy. So let\'s look at
the first row for a moment. 42% of adults with below basic in health
literacy and 27% with basic in health literacy which is a total of 69%
reported poor health. Now take a look at the last row. You see that only
8% of adults with below basic in health literacy and 17% with basic in
health literacy or a combined score of 25% reported excellent health. So
this data shows that adults who are most in need of health literacy are
the ones with the poorest reported health which is very interesting.

Now let\'s look at the percentage of adults at each health literacy
level by age. As you can see, adults who are 65 and older, they have the
highest percentage, 29%, in below basic health literacy compared to all
of the younger age groups. A big difference. We really don\'t have an
explanation for the difference in the literacy between older and younger
adults. And this is another good question to explore further. We do
know, let\'s tell you what we do know, I\'m going to tell you what we do
know. We do know that few older adults report having poor secondary
education. So as a whole the country we go to college more every year,
more educated. We also do know that older adults report having more
disabilities than younger adults especially with vision, hearing, and
possibly declining memory or other cognitive abilities. But we don\'t
know that this education and disability alone explain the difference
that we see here. We hope this is going to get explored further.

Next slide is also interesting. It compares the use of internet to find
information about health issues among all age groups. Now again here,
generally speaking, adults in the older age groups were less likely to
get health information from the internet. The percentage of adults who
were 65 and older who reported getting no information about health
issues from the internet is 77%. It is by far the highest percentage
among all of the age groups.

I do want to let you know that we have finally released the public use
and the restricted use data files. They are on our website. There will
be instructions for installing the data from the electronic code book.
You can get that on the website. If you wanted to have access to
restricted data files there are information on our website in terms of
how to obtain the required license. Then what else can I say about this,
let\'s see. There are differences between the public use and the
restricted use of the file. Public use data files do not contain data on
the oral reading fluency which we call \[SAN\]. They don\'t have that.
And also the information in the public use data files is not as detailed
as it is in the restricted use data files.

One more thing, one additional related issue I want to mention here is
that a couple of weeks ago we had a training for people who wanted to
know how to use the NAAL Data. We are hoping to have more of these
trainings in the future. Check our website periodically. There will be
information on future training and also I understand that we now have a
discussion list going so you can be on that as well.

We have, I just wanted to tell you in closing what other reports you
should be expecting. There will be a report on small area estimation. We
will be reporting indirect estimates for all 50 states and all counties
which is very exciting. And we hope to release a report on oral reading
fluency and the results of the supplemental assessment we also called
(inaudible). There is a report that I am writing; it presents a new
theory of functional literacy. Just to give you a little preview it
states that performance on everyday literacy is a function of task
demands. These are all very complicated but needs to be described,
\[text\] and \[tax\] characteristics and respondent\'s skills. And we
had this quantified, defined and actually validated with a
multidimensional methodology. So that is also very interested for you
guys who are interested in theoretical and methodological and
psychometric issues.

This is all I have to say. These are the reports that we have published
in the last few months. Thank you so much.

Dr. Sandra Baxter: Thank you Sheida so much for that wonderful overview.
To our online viewers we will be addressing your questions at the end of
these presentations. Please use the text box below to enter your
questions and then click on the Submit button. Now let\'s turn to Toni
Cordell who is going to share here experiences with us as a patient and
as someone who is an educator on health literacy issues. Toni, welcome.

Toni Cordell: Thank you, Dr. Baxter. Good to be with Dr. White.
Interesting story. I graduated from high school reading at the fifth
grade level. By the way I didn't do that to myself on purpose. I could
read well enough to get by but not ahead. I could read well enough to
graduate from high school and not well enough to get a real education. I
read well enough to read a couple of Dr. Seuss books to my children and
not well enough to read a book on how to nurture those children. I read
Dr. Seuss books to my children but, I think I just said that. I also
could read well enough to see the difference between a can of cat food
and a can of tuna fish, but I couldn\'t read and follow the recipe in
order to prepare that tuna fish. I could read well enough to get any
minimum wage job and not get a real career. And I read well enough to
sign my name to legal papers but not well enough to understand that
those legal papers had very costly consequences.

So I read well enough to get by and not ahead. Let me try to explain the
way I read. When I read I named one-word-at-a-time. They were just lines
and circles on pages. By the time I got to the end of the sentence I
could hardly tell you what any detail was or did I have any
comprehension of what I had just named. Also my fingers read before my
eyes did. Now that might not make sense to you, but if you stood in
front of me and handed me a single sheet of paper my fingers could tell
me that. And I might read off of that paper to myself. But if my fingers
told me you added another sheet or two, therefore there were several
sheets of paper there, I wouldn\'t read in front of you even silently.
Now I know very clearly this is flawed thinking but I so feared that if
I tried to read silently in front of you that you would be able to tell
how slowly my brain was working. I couldn\'t handle that kind of
humiliation. So I wouldn\'t read in front of you, therefore my fingers
read before my eyes did.

Now I finally had a challenge in the medical system because of my poor
reading skill. About 30 years ago I knew I needed to see my gynecologist
and I did so. During the exam the doctor said, \"Oh that is an easy
repair.\" So we set up a surgical date and I showed up at the hospital
across the desk from the admissions clerk and she pressed paper after
paper after paper before me. Now I know that I have to sign those papers
in order to get my easy repair. So I did as I was told. Signed
everything. Didn\'t read a single sheet. And by the way, when I was with
the doctor I didn\'t ask any questions.

So there I am, I go in for the surgery and thank goodness it was
successful surgery. However during the six months follow-up exam the
nurse comes bounding into the office and says, \"Hi, Toni, how are doing
since your hysterectomy?\" Well excuse me, but a hysterectomy means you
cut something away. You cut something out. I was flooded with
humiliation and silent shame. I did not say excuse me, hold it, let me
get clarification here. I didn\'t want her to know; I had not understood
what that easy repair was. I acted as normal as I could on the outside
and simply said I am doing fine, thank you. But it was quite frightening
in retrospect. Now fortunately I had the three children we wanted, I
wasn\'t planning on more pregnancies, but that could have been a tragedy
beyond measure.

So do you understand that I feel like I am on a first name basis with
failure? It is around every corner waiting to attack me. Claws in my
shoulders, holding me back from opportunity that I would really like to
have. Not being able to read well closes many doors. My favorite word is
opportunity. And I hate that I have missed many opportunities because of
my poor reading.

I also want to share a very positive experience I have had with the
medical profession. About 5 years ago I was sent to an urologist at
Emory University to continue to do some of the repairs that needed to be
done. Dr. Neil Galloway is a perfect example of a physician that knows
how to communicate. During my very first appointment in the examining
room Dr. Galloway came in while I was still dressed, technically we were
both still dressed, I think that is an excellent approach to first
meetings by the way. And he asked me many, many questions trying to
evaluate what was and what was not happening correctly. When he got the
answers he needed he let the nurse know to prep me. So as he left the
room she helped me get ready. Draped in one of those wonderful little
paper drapes, excuse my sarcasm, in the stirrups, that horrible table.
When he arrived back in the room he explained before he laid a hand on
me what he would be doing. And he warned me as he was doing the exam
what would be uncomfortable and what he was doing.

Very good about communicating. And then when he left the room,
instructing the nurse to get me ready for the next phase, she helped me
get up off the table, I got dressed and sat down and waited for him to
get back. When he came back, now again, chair to chair, knee to knee,
both dressed -- I am no longer feeling that vulnerability and exposure,
that nakedness that we feel in the doctor\'s office under those
circumstances. And then Dr. Neil Galloway not only told me what he had
found and what needed further testing but then he also said, and I love
this, he drew pictures also. Now I know where the organs are in the
lower abdomen. I know the basics of that. But he said we are going to
need to cut here, we are going to need to stretch there, we are going to
need to stitch here. And he drew me Picasso-ish pictures. So I wish I
had kept those; they could have made a good example.

By the time I went into that surgery I had a very good understanding of
what needed to take place even though I am still not very good at asking
questions, he knew how to communicate. And he did it very well. Because
of these things I believe that every patient has a right to be a full
partner in all medical decisions. And that requires crystal clear
communication with mutual respect.

When my husband of 30 years was in the last month of his life, prostate
cancer had metastasized into the bone. Carl was an extremely high IQ
person -- good education, college education. Bright, interesting,
well-educated. I was faced with dealing with the insurance papers. I
won\'t go into a diatribe about how awful that is but I hated it because
I still loathe paperwork.

Another factor I remember very clearly. One of the times we walked out
of a doctor\'s office this brilliant man said to me in a kind of a
sheepish puppy-like voice, almost child-like, \"Toni, what did she say
to me?\" This is an educated man. But he has been under oncologist care
for over a year. He is not functioning at peak performance, so it really
doesn\'t matter if you have a high education and a high IQ; you walk
into the physician\'s office with 100 degree temperature, flu symptoms
or cancer or whatever life threatening or not, you are not functioning
at peak performance. So we are vulnerable.

What is clear to you is clear to you. The words we use are important.
But there is more to education and communication than words. Let me give
you an example of what is clear to you is clear to you. Carl was in the
media and in the San Francisco Bay Area when Nelson Rockefeller was on
the Vice Presidential campaign, I think he was on the Nixon ticket, this
was quite a ways back, some of you might not remember. Carl and his
cameraman were assigned to go get a part of that story. So Carl and the
cameraman pulled the car over to the side of the street on the route
where Nelson Rockefeller would be driving though and Carl clearly
communicated to his cameraman -- let\'s pull over here, you get out the
shotgun and shoot him from the top of the car. Carl and Bill understood
exactly what was meant. However, the two secret service guys walking by
had a different perception of what those words meant, and they were
detained by the way.

Now Carl and Bill knew that a shotgun was a shotgun mic which is a long
mic picking up directional sound. Shooting -- they were shooting 16mm
film. They were not shooting bullets. Just an example of what is clear
to you is clear to you.

And when we are sent to the pharmacy to get a medication, thank goodness
different pills are different shapes, different sizes and different
colors. Because there are so many different prescriptions we can take.
And if a person is taking more than maybe three, how do they
differentiated? I don\'t read the outside of that bottle because there
are funny little words that mean something on there. I know how to read
the doctor\'s name; I know how to read my name. most of the time I know
how to read what it tells me to do. However some of those prescriptions
have inserts that have words on them in a font that you would have to
have 3-year old eyes to read. This is not a 12-font, which is what I
want. And these words are way beyond my understanding. I don\'t have a
medical education; they are medical-ease. So again, another way to be
vulnerable.

So I am asking you to be aware of the fact that those of us who walk
into your office or need your care may not be functioning at full peak.
But not just those of us who lack an education or who don\'t read well.
Any human being can find themselves very vulnerable, needing care.

Thank you Dr. Baxter.

Dr. Sandra Baxter: Toni, thank you for sharing that very compelling
story with us.

I want to remind everyone that you can submit your questions online now
and we will talk about them. We already have a number of questions and
Toni I would actually like to begin with you.

Toni Cordell: Alright.

Dr. Sandra Baxter: From a healthcare provider in Bedford, how do we
begin to use this information in clinical practice with older adults?
Can you give us two or three words of advice on what to do?

Toni Cordell: I understand the research indicates that when we hit 65 we
seem to come across as non-compliant, many going home and not taking
their prescription correctly. I am not 100% sure as to why that is
happening. I do know that I still feel overwhelmed a great deal. And
maybe at 65 we often end up taking more than one prescription. I wish I
had a simple do A, B and C. I am asking you not to just listen to the
words we are saying but to listen to our heart. My generation and those
before me often put you on a pedestal. We often will not ask the correct
questions. And there was a program sometime back, well, it is the Ask Me
3 program. If we could train the patients to ask three major questions
we could make your life easier so you could then help that patient by
teaching the patient the questions. And the questions are basically,
\"What is my main problem? What do I need to do? And why is it important
to me?\"

Since we haven\'t had the opportunity to train patients across the
country that gives you something else to do, train the patients.
Recently I also saw Dr. Pinkus give a lecture and one of his slides
indicated that in the past healthcare has often taken place from the
shoulders down. And he is now suggesting that in behavioral medicine
being integrated into regular medicine we need to take into
consideration the entire person. Let\'s not guillotine off the head.
Because what is going on in the head is affecting our whole body. And
possibly a great deal of the problem of what is going on in the body at
age 65 is a lifetime of experiences that cause us to think a certain
way.

I apologize for not having an easy A, B or C answer.

Dr. Sandra Baxter: That is alright. You know one of the things that I
have found helpful too is, particularly with older patients (inaudible),
taking a family member along.

Toni Cordell: Absolutely.

Dr. Sandra Baxter: And also writing down what the doctor tells you. Have
doctors who encourage that. So that is just a couple of ways. Sheida,
there is an interesting question here from a viewer. This one is rather
long so I will read it to you. The results from the earlier NAAL study
promoted the number 90 million who had inadequate literacy skills to
function in society. This was very powerful in gaining support for
health literacy initiatives. From the 2003 data, what is the number that
is considered inadequate? What are the number, what is the number of
individuals considered inadequate in their health literacy skills? Do we
include below basic and basic levels in that count? Is intermediated
considered adequate skill level? And do we include the 5% nonliterate
and 1% cognitively disabled in these numbers?

Dr. Sheida White: What is inadequate? Let\'s just look at what
individuals who are below basic, especially at the very low end of the
range. I actually gave you an example of those questions that they
cannot do, for example they cannot -- I shouldn\'t say they cannot --
they are less likely to be able to read and understand an
over-the-counter drug label. So is this an adequate or not, it is not
really for me to say. I can just tell you what these people are and are
not able to do. In general, let\'s look at it a little bit more
generally, people who are/have below basic level, especially at the low
end, these individuals cannot read connected text. They cannot read
continuous text. They cannot read sentences and paragraphs. They can
read individual words or phrases, like what you were saying, when you
were reading you were reading one word at a time, but you weren\'t
putting it all together, is that correct?

Toni Cordell: Correct.

Dr. Sheida White: That was very helpful to hear that from you because
this is the level of literacy that that they have. So if you want,
depending on what their goals in life is, what is adequate is really is
an individual decision. What they want to do, what they want to
accomplish with their life. Being able to read a telephone bill and pay
the bill is a critical functional skill. If you have to do that in your
life to get by then it is something that if you cannot do that then it
is inadequate. So I would say what determines what is adequate or
inadequate is a function of individuals and what they want to, what
goals they want to accomplish in their lives.

Dr. Sandra Baxter: Another question. Do the numbers suggest that the
state of health literacy is any different or worse than the state of
literacy itself in America? In other words, do a greater percentage of
Americans have inadequate health literacy skills than general literacy
skills?

Dr. Sheida White: As I said earlier, there is a very high correlation
between general literacy and health literacy. The correlation is
something like 0.86 I believe. So we do not have data showing that
people with general literacy are lower in health literacy or vice versa.
We see a very high correlation. They seem to go hand in hand. Now that
doesn\'t mean again that they are the same thing. But they go hand in
hand. One goes up, the other one goes up. One goes down the other one
comes down.

Dr. Sandra Baxter: Okay. I have a question about the availability of the
data. But before I ask that question I just want to remind our viewers
if you look at the box at the bottom of your screen you can click on the
button there to download the slides if you would like to today. Sheida,
another question. Is there sufficient information in the data files at
NCES, the online data files, so that a researcher can replicate the
complete methodology used to assess health literacy? If not, why not and
when will that be available?

Dr. Sheida White: To replicate the complete methodology I\'m afraid is
not an easy task. This methodology, the NAAL methodology is highly
complex. It depends on what aspects of methodology maybe we should ask
some further questions. It depends on what aspect of methodology that
you are talking about. Is it analysis or is it data collection? If you
are referring to methodology as it refers to the analysis, you can
certainly do what we did, use the AM software and analyze the data
exactly the way we did; there should be no problem with that. And as I
have said before, we have directions for that on the website. And you
can give us your name, by all means and we are collecting those names to
offer another training session. And we can make sure that you know how
to analyze the data. You can replicate those analyses for sure, if you
are talking about analyses.

Dr. Sandra Baxter: Okay, great. Thank you. Another of our viewers who is
a healthcare provider suspects that some of her patients are struggling
with reading and that there are others who can\'t read or write. And her
question is whether or not she should directly address this issue with
them by asking whether or not they can read and write. And seeking to
help them with their medical insurance forms she is concerned about
embarrassing them. Toni do you have some advice on how to approach this
problem with a patient when you suspect they have it?

Toni Cordell: Yes, thank you. First of all, please don\'t ever ask
anyone if they can read or write, even a 3-year old. I want to a
\[LABAC\] program when I was in my late 40s and had a tutor. So my
reading was dramatically improved. However, if you had asked me prior to
that if I could read, I probably number one would have bit your head off
because I would have felt the shame of that; and number two I would have
said yes because I could read well enough to get by. So don\'t ask
people. There is just too much humiliation in that.

Insurance forms -- oh please help me with my insurance forms. But there
is a way to ask. There is a way to say, \"Would you like us to assist
you with your insurance forms. We would be happy to do that.\" So you
are providing me with a service rather than judging my poor reading
level.

Dr. Sheida White: Can I just say something? We, of course, we are
focusing on individual\'s skills in this case but let\'s not forget that
a lot of these materials are not all well written either you see. You
could have multiple PhDs and not still be able to read and understand
some of the government documents, and actually many government documents
or health-related documents like the inserts that you showed. So there
is room for the publishers of health-related materials that are in the
audience there too to pay attention to this as well and make sure that
the readability of the materials is tailored to the target audiences.

Dr. Sandra Baxter: You are making a very important point here. Because
it isn\'t just an issue of the health literacy. It could be an issue of
document literacy.

Dr. Sheida White: And the materials that are used.

Dr. Sandra Baxter: Right.

Dr. Sheida White: Exactly.

Dr. Sandra Baxter : Toni, I see you had a \[point to make for us\].

Toni Cordell: Yes, I met a PhD in Michigan who teaches health literacy
to medical professionals. And before she became an instructor, when she
had her own practice she talked about the fact that she had a test. If
the literature ended up being thrown away in the parking lot or
littering the parking lot, that literature was not acceptably done.
Because if you can read the literature and you can understand the
literature, most likely you are taking it home to either re-read or
share it with someone else. If you are dumping it in the parking lot or
in a receptacle in the parking lot, chances are you just determined that
you cannot read that and so why bother with it. And I love that about
her.

And one other thing I was thinking about a moment ago. When we who are
not dynamic academically walk around, I can blend with you fairly well.
I can pass for literate fairly well. If I went into a room in a
wheelchair you would automatically know that I was challenged in some
way. But when I walk into a room with this hidden problem up here,
people make assumptions that I am as educated as they are. And so it
just creates an invisible, unintentional secrecy. And so the medical
practitioner is given an extra burden in having to deal with us. And I
apologize to you for that because it lays at your feet having to figure
out what to do with us. And we are overly sensitive an awful lot of the
time. Very few of us will say, \"Excuse me but I am going to need your
help in reading this.\"

Dr. Sandra Baxter: Yes, I think that is a problem I think also. It goes
with a more general problem that most people don\'t like to challenge
their doctor.

Toni Cordell: Correct.

Dr. Sandra Baxter: And so there is that always the give and take that is
necessary.

Toni Cordell: Mutual.

Dr. Sandra Baxter: The mutual respect, that is right. Is there something
we could be doing to lower the stigma so that people don\'t feel so
embarrassed about this problem?

Toni Cordell: I don\'t know if that is possible. There are so many
components in our human life where we judge each other. Whether we are
judging each other so that I can feel really good about myself and
therefore judge you less or whether we have just been raised in a
certain way that we have condemned another because they don\'t reach our
standard. I would love to feel less stupid. After all, I sat in class
for 11/12 years. I finished high school so I sat there just like you sat
there. And yet I didn\'t get it. My self judgment is pretty heavy. My
self loathing is pretty heavy. Even if I could get rid of that it would
be (inaudible).

But like so much of our judgment it is based false information. So as
long as there is false information and perception, I suspect we will
always be judging each other.

Dr. Sandra Baxter: So it really speaks to the need of educating the
public about the problem and helping people to understand that this is
not an individual\'s flaw or deficiency.

Toni Cordell: Yes, I don\'t believe, you will never convince me that a
child goes to the second grade and goes to the teacher, \"I don\'t care
how hard you try, I ain\'t gonna get it.\" No, I believe we are created
curious, we want to get it. We want to succeed. Those who are dropping
out I believe often times are voting with their feet and saying I
didn\'t get it. They are not necessarily saying the teacher didn\'t
present it correctly. There are many reasons why they didn\'t get it. In
my case, learning disability, memory problems, whatever it was. But if
we are going to claim to be educators then we have to find a way to
impart that knowledge so that that human being can be all they were
designed to be. I hate the limitations in my life.

Dr. Sandra Baxter: Just a couple of more questions here about technical
reports about the NAAL itself. For individuals who spoke English/Spanish
only or another foreign language, did they receive the assessment in
their native language?

Dr. Sheida White: They had a choice of receiving, now the assessment let
me be clear about this. The assessment itself is all in English because
this is an assessment of English literacy not of Spanish literacy.
However we had, the background questionnaire was offered in English and
Spanish and the easy core items, the instructions to those items were
offered in English or Spanish. And the supplemental assessment also was
offered in English or Spanish. In that case they could also respond in
Spanish. So they had an option and based on their desire the interviewer
gave him one or the other form. Does that answer the question?

Dr. Sandra Baxter: Yes, I think it does. Toni, for you. Someone writes,
I have given health literacy presentations to physicians. They have been
very interested in the topic but don\'t see it as a problem in their
practice. How can this data be used, how can these data be used to help
physicians understand that low literacy, low health literacy patients
are in fact a problem in many practices?

Toni Cordell: In order to not have a patient that is struggling like I
have, you would have to be practicing on another planet. The statistics
very clearly show us that a full ¼ of our population is not reading
above the fifth grade level. So I am going to make a guesstimate and any
of them can come and challenge me; I am happy to be challenged. I am
going to guess a minimum of 10% and probably 20% are not getting the
written material and missing some of the verbal communication. Now if
they are in a part of the community where education has been lax, then
their clientele, their patients may rank in higher numbers of poor
literacy. So any physician, and I don\'t care if he is in the most
wealthy section of town, he or she, see I am from the old school -- they
were all male doctors in the old days -- thank you that they are not all
male doctors today. There is just no way, unless maybe a plastic surgeon
to the very, very elite, I don\'t know. But you have got to have a
patient or two in every practice that is lacking educational skills,
maybe to one degree or another. Maybe they are not fully illiterate but
again let me take you back to my husband. IQ in the top 1 percentile in
the world, dealing with cancer, fatigue, needing morphine to function.
He may be intelligent and highly educated but he is ill. So the doctor
has a responsibility to rethink whether or not he has patients who need
extra help.

Dr. Sandra Baxter: And a related question, what are the implications for
informed consent for people at basic and below basic literacy levels.

Toni Cordell: They give me the clipboard and I sign and I hand it to the
person and I said, \"By the way I didn\'t understand this.\" I love to
do that because number one I want them to know that I didn\'t understand
it because there are funny words in the HIPPA and that sort of stuff. I
don\'t even know what HIPPA stands for, I just know that we talk about
HIPPA. And sometimes the young lady will just look at me and other times
they will joke, \"Yeah, we don\'t get them either.\"

The point being that the moment I have handed that signed piece of paper
over and said I don\'t understand this I have just put the legal ball
into your court and said if I have a problem and want to sue you, I just
warned you. Now I am not telling you I want to sue anybody, I haven\'t
done that with any medical professionals, I just want you to be on
guard. It is a piece of paper and it virtually can be ripped apart in
the court of law if somebody decides to do that.

Dr. Sandra Baxter: The issue really is, once the patient signs that they
are not able to understand what it says and it isn\'t carefully
explained the implication is that the doctor could have a legal problem,
right. Alright.

Sheida, a question for you. How would you categorize the impact that the
NAAL health literacy assessment has had on the health and literacy
fields. What indicators if any do you have that these findings are
changing the way patients and healthcare providers relate to each other.
Do you know anything \--?

Dr. Sheida White: it is too new. It is too new the assessment. The
results were just released a few months ago. And we are still continuing
to analyze the data and hopefully in five or ten years we will see some
dramatic changes.

Dr. Sandra Baxter: Okay. And do you know if there are plans underway for
assessment to determine if the release of these findings have had an
impact? Or really is this the kind of study that gets funded by other
sectors? Studying the interaction between the doctors and the patients?

Dr. Sheida White: We don\'t have any plan for doing any. Actually I
don\'t think I have any plans for doing any additional analyses. So it
is up to the secondary analysts to do whatever they want to do. NCES
does not have any plans.

Dr. Sandra Baxter: But that certainly is an area that should be looked
at and so I think encouraging researchers to think about those topics is
really important.

Dr. Sheida White: Exactly I think. We really are counting on you to
carry the ball.

Dr. Sandra Baxter: You know I think that is probably an interesting
point that we need to make here. That so often these national
assessments gather so much rich data and it is not data that we in the
government get to analyze at a very in depth level many times. So we are
really encouraging by making those data files accessible to the public
and to other researchers, we are encouraging the secondary analyses.

Dr. Sheida White: Exactly. And we provide data and training and we
answer your questions and whatever we can do to help. But we are just
not capable of analyzing all of the, and answering all of the research
questions that are out there.

Dr. Sandra Baxter: If you are interested in more information about the
public use data files or secondary analyses, Sheida would you please
just share with them the email address, the website address that they
can go to.

Dr. Sheida White: I think it is in there in the last slide.

Dr. Sandra Baxter: Okay.

Dr. Sheida White: The last slide contains that information.

Dr. Sandra Baxter: Okay, so at some point I am going to ask that we put
that last slide back up so that our viewers have an opportunity to write
down the email address and the webpage address if they didn\'t copy it
before. So let\'s turn back --

Dr. Sheida White: Yes, it is on the top in here. You see, the header of
the last slide.

Dr. Sandra Baxter: Okay, thank you for putting that up. Let\'s turn to
our next question. Okay. I understand that what is adequate is
subjective. But they came up with the 90 million figure last time. What
is the comparable figure with the 2003 data? So was there a comparison
between the 1992 and the 2003 data?

Dr. Sheida White: Well first of all we re-analyzed the 1992 data based
on the new performance standards that the academy developed for us in
2003. So yes, it is possible to compare the 1992 and that is what we
compared and the results are based on that comparison in our recent
reports. How they came up with, what was it 90 million for --

Dr. Sandra Baxter: 90 million who were --

Dr. Sheida White: I don\'t exactly know what exactly that refers to but
one thing you need to keep in mind is that in 1992 we had a different
system of performance levels. We had 5 levels and now we have 4 levels.
And in addition to that in 2003 we routed some of the people to a
supplemental assessment. In 1992 we had 5 levels. Level one was huge.
And so what happened is that we didn\'t really tease out people with
different levels of ability we just put them together in one category
called Level one. So we tried to, so if somebody for example couldn\'t
read well, couldn\'t understand what they were reading it was very
difficult to tell whether these people didn\'t have inferential skills
or comprehension skills or they just didn\'t have the basic word level
skills. So that was the whole purpose of having a supplemental
assessment so some of these people took the easier assessment, the
supplemental assessment. So whatever we have in our basic and below
basic levels it is more homogenous group.

I would say go with the 2003 numbers and the 1992 numbers that we report
are also accurate and they are based on the re-analyses of that data
using the new methodology.

Dr. Sandra Baxter: Okay, thank you. There is a question here from one of
our viewers. Is there research across countries in terms of the impact
of literacy and health? Do countries that have universal health
insurance also have the infrastructure to help low literacy patients? Do
we have any international data, Sheida?

Dr. Sheida White: We don\'t have any international data on health
literacy to my knowledge.

Dr. Sandra Baxter: Okay. Toni, a question for you. What are some of your
recommendations for helping the community as a whole increase their
medical literacy knowledge? So looking across the various doctors and
patients for a community, what can a community do to raise health
literacy levels?

Toni Cordell: Do we have another couple of hours? There are
professionals in literacy who end up with those of us who are adults
trying to fix the problem. I believe it is better to educate in the
first place correctly than to fix the problem later on. Of course we are
able to fix the problem but it is essential that early education teaches
a child to reach before they exit the third grade. Now the whole
community really depends on that. It is not just the problem of that
student that falls behind. It is not just the problem for the parents
who are dealing with that student who may -- well most recently somebody
has sent me some research material talking about children age boys,
excuse me boys, ages 7 to 10 who were poor readers in school have a
higher percentage of depression. It was indicated over and over and
over. And they came up with that based on reporting back from the
parent, the child and the teacher. So this wasn\'t an isolated case.
Everybody around this young student knew this was happening.

For me, when I think about my own story, if somebody could have fixed
this problem when I was in the third grade my life would have been
easier. So I do believe that if we make sure the educational process is
working and working correctly that we catch a child as they are falling
through the cracks. I don\'t know how. I am not trained to be a teacher.
But we have to do it right the first time. And when it is not done right
the first time let\'s then fix it the following year or the next year.
Let\'s not do social promotion. I\'m an example of social promotion. It
was probably much easier to push me through than to figure out what to
do with me. Poor reading skills often add to juvenile delinquency. Why
do we need that? That costs us way more than educating a child. Not just
in dollars and cents but in broken hearts of moms and dads and broken
lives.

So for me it is educating the child correctly in the first place. And if
doctors want to get involved then let them go to the literacy programs
in their community, have a site down with some of the adult literacy
students face to face, get acquainted over a cup of coffee, a sandwich,
and find out that we are human beings. Again we didn\'t do this to
ourselves on purpose. It is not because we don\'t want to comply. We do
want to be a part of the community. And by the way, those adults like me
that I have met who have gone to programs and have gotten help, we are
thrilled to have the opportunity to be a part of the solution. We don\'t
really want to be a part of the problem.

Dr. Sheida White: What programs did you -- Can I ask you?

Toni Cordell: Yes you may. In 1987 I was in Oklahoma City and went into
a literacy program. And they assigned a tutor who sat down and used the
LABAC technique to teach me the sounds of the letters. I had never been
taught phonics. And the LABAC system had an overlay of an image with
each letter. And I seemed to very visual and it worked like that for me.
Now I know we have some who want to argue whether phonics works or whole
language. I would vote for phonics because I had had whole language and
it had not worked for me. But then again, I know we can have experts on
each side of the issue come and beat each other\'s brains out. Weill
let\'s stop doing that and let\'s do whatever is necessary to educate.

Dr. Sheida White: So what you are saying is you had a high school
degree?

Toni Cordell: Oh, I graduated from high school.

Dr. Sheida White: You graduated from high school but you couldn\'t read?

Toni Cordell: My joke is that I couldn\'t have read my, I still don\'t
know if I could spell the word diploma. I\'m still not a great speller.

Dr. Sheida White: You had problems with phonics.

Toni Cordell: I didn\'t know how to sound out the words. And a strange
situation is I still can\'t figure out how to spell the word decide. So
I have to write that in the front of my dictionary. Because I go
D-E-S-D-I-S-D-E-I-C-D-E-C-E. I mean I begin to just play this horrible
game and I have to look in the front of the dictionary because I don\'t
know enough of the letters to look it up in the dictionary. Does that
make sense?

Dr. Sheida White: Yes, and so what you are saying is that training the
child early on with the proper basic reading skills is the key.

Dr. Sandra Baxter: Correct. Without reading how is the child going to
help themselves. That has exactly been the point of federal policy over
the past several years. We have really been focused on the issue of
teaching children to read early.

Dr. Sheida White: And early.

Dr. Sandra Baxter: Have all students reading on grade level by grade 3.
Toni we will have to keep you in mind and bring you back next month when
we have our webcast on adult reading.

Toni Cordell: Alright.

Dr. Sandra Baxter: And we will talk a little bit about the component
skills, appropriate instructional techniques and what really matters,
what it is important to do to help adults learn how to read. You are
right, there has been what has been called the Reading Wars going on for
a number of years. But I would like to believe that with the National
Reading Panel\'s report and with the work that is coming out of the
National Institute for Literacy, the US Department of Education\'s
Office of Vocation and Adult Education on adult reading that we are
putting those wars to rest and really moving towards evidence-based
practice.

So for our viewers we will have a webcast next month devoted entirely to
that topic. We hope you will join us for that one as well.

We have just a few more minutes here. Time for maybe two more questions.
Sheida could you tell us when the next Health Literacy Assessment is
scheduled?

Dr. Sheida White: I don't know.

Dr. Sandra Baxter: Okay.

Dr. Sheida White: I don\'t know. It is not for me to decide. The higher
ups have not determined that.

Dr. Sandra Baxter: Okay, so we are still waiting to hear --

Dr. Sheida White: We are still waiting; I\'m sorry.

Dr. Sandra Baxter: Alright. And let\'s see. Give me a moment to --

Dr. Sheida White: Sure.

Dr. Sandra Baxter: With health literacy so strongly associated with
English proficiency and educational levels, do you see adult and family
literacy programs and with ABE, GD and ESL services playing a role in
addressing this problem?

Toni Cordell: I think it is a perfect place to add every person who has
a stake in the success of education. Family literacy. Are there
opportunities for a medical professional to show up at a program and
have an exchange, not just a lecture, don\'t just talk at me, but get me
engaged in the discussion. Can I share some of my personal issues? And
then can I ask you lots of questions? It seems to me every stakeholder
needs to be brought to the table and get back to mutual respect. In the
past, in my early childhood the doctor was on such a pedestal, the he,
the man doctor was on such a pedestal that we didn\'t dare ask questions
because it seemed it would be an insult to their education and
intelligence. Now a patient walks in with evidently a ream of paper they
have just gotten off the web and the doctor may feel horribly
intimidated. I don\'t know.

But let everybody come to the table. And I have been very impressed at
several of these organizations. The National Patient Safety Foundation
inviting me to sit on their board of governors, not because I have an
education but because I am thinking about this issue from my
perspective. And my perspective has value.

Dr. Sandra Baxter: And I think that is a really important point to keep
in mind. Keeping the lines of communications open between the various
communities that have a stake in this issue really is what is going to
lead to a resolution of the problem or strategies appropriate for
addressing it.

We have received many more questions than we have an opportunity to
answer right now during this live webcast. But we do plan to take those
questions and we will answer them and post the questions and the
responses online at the Institute\'s website at
[www.nifl.gov](http://www.nifl.gov/). I want to thank my wonderful
panelists, Dr. Sheida White, Toni Cordell for being with us today. And I
want to thank you the viewing office, the viewing audience for taking
time out of your busy schedule and joining us for this important
dialogue.

We do believe that the results of the National Assessment of Adult
Literacy, the viewpoints expressed here, and viewpoints expressed by
other experts around the country are going to make a difference in
addressing this critical issue in our community and in our nation.

Remember, you can view this webcast again at the Institute\'s website.
It will be archived and saved there for you. For the National Institute
for Literacy, I am pleased to have been a part of this dialogue and we
encourage you to share your questions, comments and ideas with us on the
Institute\'s discussion list. Thank you so very much for joining us
today. From Washington, DC, this is Sandra Baxter.