[HealthLiteracy 4248] Re: Principlesfo healthliteracyandavoidlabeling

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Carol Collins carolc3 at u.washington.edu
Tue Mar 9 18:04:02 EST 2010


Chris:

Your point is essential. Medication guides are not designed from a patient point of view. No one is thinking of your question as they write these things and an incredible series of regulatory restraints have been placed on this material that make it less useful.

I was surprised to read an FDA review of one of the drugs approved last year... the pharmaceutical company had included some general information regarding treatment of the disease (the exact wording was redacted). The FDA reviewer asserted that the patients were supposed to learn this information from their physician and required this information to be removed. Without seeing the actual information, I can only speculate. But I am guessing that many patients might have found this information useful.

We don't tolerate this "I will decide what you need to know" attitude as consumers of other good and services. Why is it appropriate in medicine?

Carol Collins
----- Original Message -----
From: Christine Miller
To: The Health and Literacy Discussion List
Sent: Tuesday, March 09, 2010 1:50 PM
Subject: [HealthLiteracy 4247] Re: Principlesfor healthliteracyandavoidlabeling


Bill,

Are you suggesting that in order to show consumers how the prescription "solves" their particular problem, that the wording needs to include an explanation for how/why this will help their specific issue? Currently in all the verbage found in a pamphlet accompanying my prescriptions, I can't find anything that explains why it is helpful.

Chris Miller

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From: healthliteracy-bounces at nifl.gov [healthliteracy-bounces at nifl.gov] on behalf of William McAfee [William.McAfee at crhs.net]
Sent: Tuesday, March 09, 2010 3:58 PM
To: The Health and Literacy Discussion List
Subject: [HealthLiteracy 4246] Re: Principles for healthliteracyandavoidlabeling


Carol and Andrew,

I have been lurking somewhat in this discussion, but with the point about "information must be valued and trusted" prompts me to put in my two cents. I think the health literacy area could take some points from marketing (i.e. facilitating the exchange process) with its research of consumer behavior (understanding the customer). Perception of reality (which in some cases may not be reality) is one of the major driving forces of consumer behavior and is one of the most commonly over looked facts in the world of marketing. I might add this is probably true in the world of health literacy. Maybe patients also toss pamphlets because they don't see it as a solution to their problem. Consumers are not "buying" a product/service for the "product". They are buying a solution to a problem. Health literacy will help facilitate "exchanges in the healthcare market", but I doubt that anyone would "buy" health literacy for just the sake of having health literacy. Where is the value?

Bill

William McAfee, Ed.D., Education Advisor
Columbus Family Medicine Residency
The Medical Center
Columbus, Georgia
706-571-1814 (Voice)
william.mcafee at crhs.net
-----Original Message-----
From: healthliteracy-bounces at nifl.gov [mailto:healthliteracy-bounces at nifl.gov] On Behalf Of Carol Collins
Sent: Tuesday, March 09, 2010 2:56 PM
To: The Health and Literacy Discussion List
Subject: [HealthLiteracy 4240] Re: Principles for healthliteracyandavoidlabeling


Andrew:

All this discussion is relevant but one issue that hasn't been addressed is that the information must be valued and trusted by patients. We know that patients toss medication pamphlets.

Our preliminary research found that in a high literacy patient group, the subjects hated the risk management language and the lists of adverse events in patient medication information sheets. They correctly inferred that this information is written by the pharmaceutical companies (which is the resource for most types of medication information sheets, even those written by pharmacies). They emphatically stated they did not trust information from pharmaceutical companies.

It is possible that this view is shared by patients with lower literacy levels....if they don't trust or value the content, changing the readibility of these sheets is probably not going to increase their use by patients significantly.

Carol Collins
----- Original Message -----
From: Andrew Pleasant
To: The Health and Literacy Discussion List
Sent: Monday, November 16, 2009 11:44 AM
Subject: [HealthLiteracy 4234] Re: Principles for health literacyandavoidlabeling


Hi everyone,

The approach that the Calgary Charter begins to describe moves health literacy away from being seen only as a set of skills and abilities (plain language for example) and toward an effective model for changing health behavior and health systems.

That is, health literacy is a theory of health behavior change when taken at the robust level most recently presented in the Calgary Charter but other publications as well.

In relation to the Health Belief Model, for example, health literacy asks us to not only tell people they are at risk – much like the CDC approach also commented upon – but also to make sure folks also know the why and how of being at risk. That means making sure all people can find, understand, evaluate, communicate, and use information about that risk. Both the public and members of the public serving in their professional roles as health professionals need to be able to accomplish those tasks/ goals / understandings.

So, in short, it is worth suggesting there is no need to employ another theory of health behavior change to supplement health literacy – there is a viable logic model of behavior change embedded in the definition put forth in the Calgary Charter and elsewhere ... that logic model begins with finding; moves through understanding, evaluating, and communicating; and then ends with using information (i.e. behavior) to make informed decisions.

Important next steps, of course, are related to data gathering/ hypothesis testing/ building an even stronger evidence base specifically in this regard ... But I suggest the field has disempowered itself at times by suggesting health literacy is not a sufficiently viable approach in and of itself to generate informed behavior changes that can lead to positive outcomes at the individual/ clinical level as well as the collective/ public health level.

Best,

Andrew Pleasant




On 11/14/09 11:23 AM, "Lendoak at aol.com" <Lendoak at aol.com> wrote:


Dear Julie and others,

Re/ Giving information beyond the basics...

The three H1N1 basics cited in an earlier posting are certainly about as basic as one can get. What's needed beyond these three seems to be a way to get everyone motivated to do these consistently. Shouldn't we consider health education theory, which is well known to this list serv, as a way to foster the motivation?

For example the Health Belief Model (HBM) tells us that people are likely to be motivated to take preventive measures when they are convinced that 1) They personally are at risk, 2) But there is something they can do about it. 3) It won't cost them too much to do it, 4) They will get specific benefits from doing so.

Perhaps a message structured to the content of the HBM is really the only additional information needed to get better outcomes. What do you think?

Len and Ceci Doak
Patient Learning Assoc.

In a message dated 11/13/2009 9:51:35 A.M. Pacific Standard Time, julie_mcKinney at worlded.org writes:

Thanks, Sandra and Chris, for your thoughts and good examples about the
need to go beyond the basics!

You both actually explained much more eloquently part of what I meant
when I mentioned the basics. I was explaining why I was referring to
systems along with materials, because so often when projects are funded
specifically in order to serve the low literate population, the focus is
solely on easy-to-read materials. I said:

* We need to remember that it's not just the materials, but also the
system of delivering them, evaluating them, and ensuring that they are
effective at helping patients take action to improve their health. For
example: if you hand out a well-developed easy-to-read piece of
information, you still need to use the teach-back method to make sure
the patient understands the basics, that they actually do use the
material to remember the information, and that they are able and willing
to take the actions instructed in the material. Sometimes we seem to
think plain language materials is the main goal, but it is really one
step in a larger process of improvement.

One important piece that you both brought up is the fact that people
getting these messages need to be able to critically analyze the
information they receive and use it in order to make decisions that will
help them personally to keep their families healthy. Sometimes this
requires some scientific knowledge in order to assess the seriousness of
something like H1N1. Other times it requires the ability (and
confidence) to weigh different cultural and social factors in deciding
to put your baby to sleep on his/her back or stomach.

So now, my question is... How can we follow the information through to
this point? How can we encourage the people and the system to allow for
this critical thinking?

The one answer I can see immediately is to keep the adult literacy field
active in health literacy. Literacy teachers address multicultural
beliefs and habits, critical thinking, and the use of authentic
materials (which could address scientific facts) in their everyday work
with learners. This can be of great value to the process of improving
the effectiveness of this new, longer path of health literacy.

Thanks again, and I hope to hear more!
Julie

Julie McKinney
Health Literacy List Moderator
World Education
jmckinney at worlded.org
>>> christina zarcadoolas <christina.zarcadoolas at mssm.edu> 11/12/09 3:47
PM >>>

I would like to agree and add my thoughts to Sandra's remarks about
moving beyond basics.

This past Sunday I spent a full day in Central Park with a video crew
chatting with people about swine flu - what they knew about it, how
concerned they were, what they plan, or are planning to do to minimize
risk. I'll be using these interviews in an ongoing ethnographic study
of public health literacy about pandemic.

Even before my sunny day in the Park, from other intercepts done with my
graduate classes this Fall, and in my own health literacy load analysis
of media and public health messages, I am convinced that a focus on
communicating "just the basics" has inadvertently contributed to keeping
people in the dark, or worse still, confusing them about the risk and
what they should be doing.


I'll do the unsavory thing of quoting myself from one of my recent blog
posts -"Public Sound Bites Do Not Create Public Health Literacy about
H1N1", in which I argue for the need to go beyond the basics
http://publichealthliteracy.blogspot.com/2009/10/pubic-health-sound-bites-do-not-create.html

..........
"Let’s use the 3 universal H1N1 messages that most experts (federal,
local) have hammered away at since last Spring:

1. Wash hands thoroughly and frequently with soap and water

2. Avoid contact with people who are obviously sick

3. If you get sick with any cold or flu, stay home from work or
school; avoid contact with others as much as possible

New York City Office of Emergency Management
http://www.nyc.gov/html/oem/html/home/home.shtml

These directives - “Don’t eat the fish from this river.” …”Take all of this
medication,” they reflect 3 important assumptions we make about people:

The receiver trusts the messenger and is predisposed to follow
instructions
The receiver understands enough of the underlying health/science concept
to judge the messages import
The receiver has the means to do what the message is directing
As the primary health information the public gets these sound bites are
woefully, inadequate. They leave the public unarmed in the face of
fast breaking, and concerning information about the serious of the
H1N1."


Stack the above "basics" against trying to understand a typical example
of coverage from the Washington Post about the relationship between H1N1
and deadly pneumonia.
“Seasonal flu viruses tend to infect primarily the upper respiratory
system. But recent animal studies and autopsies on about 100 swine flu
victims show that H1N1 infects both the upper respiratory tract, which
makes it relatively easy to transmit, and also the lungs, which is more
similar to the avian flu virus that has been circulating in Asia.

"It's like the avian flu on steroids," said Sherif Zaki, chief of
Infectious Disease Pathology at the CDC. He noted that unusually large
concentrations of the swine flu virus have been found in the lungs of
victims: "It really is a new beast, so to speak."



There is nothing in the 3 precautionary sound bites that prepares the
public to understand, in lay person’s terms, the import of scientists’
universal concern about H1N1.


This season's swine flu events have taught me the lesson one more time -
simplifying and focusing on "the basics" ( granted a term that needs
more finessing) deletes out most evidence salient to consumers, leaving
staccato, look like sentences that create yawning inferential gaps most
people simply can’t fill.
With the eye on just the basics we too often backgrounded vital health
literacy concepts that people need to understand and trust our "basic
recommendations." We background all of these core “scientific” facts and
then wonder 40% - 50% of parents don’t intend to vaccinate their young
children; and millions of adults joined them in this ambivalence.


The more I watch and learn, the more I am convinced that the
consequences of keeping our eye only on the basics is that we may very
well be perpetuating limited access to the complex and nuanced
information necessary for patients and publics to make informed
decisions about health and risk. And, as importantly, un-tempered and
unquestioned surface level simplification is perpetuating a disequity in
access to the larger information commons. Neither is a very good result.



Chris
Just a small town linguist trying to figure things out


Christina Zarcadoolas, PhD
Public Understanding of Health and Science
Dept. of Preventive Medicine
Mount Sinai School of Medicine
PO Box 1057
One Gustave L Levy Place
New York, NY 10029
212-824-7061

Visit my blog www.publichealthliteracy.blogspot.com


- Show quoted text -


On Wed, Nov 11, 2009 at 5:24 PM, Sandra Smith <smiths at bayvista.com>
wrote:

Julie writes: ....make sure the patient understands the basics, that
they actually do use the material to remember the information, and that
they are able and willing to take the actions instructed in the
material.

Julie, the above statement leads me to emphasize that patients need to
understand more than "the basics"; and compliance does not equal health
literacy. The idea that pts need "basic literacy" to understand "basic
information" is true, but insufficient for effective use of healthcare
and effective selfcare. Nutbeam (2000, 2008) outlined levels of health
literacy including interactive and reflective skills in addition to the
basics (reading & numeracy). These advanced skills are needed get beyond
simply understanding the words and following instructions to making
meaning from information and acting on it in real life. For mother may understand a pediatrician's instruction to put the baby to
sleep on his back to avoid SIDS (Sudden Infant Death Syndrome - death in
an infant that cannot be explained, also called Crib Death). She may
take the "Baby Back To Sleep" sticker to remind her, and she may agree
to comply. However, back home in "real life" the grandmother ma
y insist that babies sleep on their stomachs to avoid aspiration. Beyond
understanding, there are many social, economic and environmental issues
at play that affect the mothers' action. For example, the mother may
decide the risk of the baby sleeping face-down is less than the risk of
losing a safe place to live by defying the grandmother. In that case,
she will be non-compliant, but she has made an "appropriate health
decision" and has shown good health literacy. ss
Sandra Smith MPH PhD


-----Original Message-----
From: healthliteracy-bounces at nifl.gov
[mailto:healthliteracy-bounces at nifl.gov] On Behalf Of Julie McKinney
Sent: Wednesday, November 11, 2009 1:41 PM
To: healthliteracy at nifl.gov

Subject: [HealthLiteracy 3707] Re: Principles for health literacyand
avoidlabeling

Hi Wendy,

Thanks for bringing up this excellent point! You are right that there is
a large and "terribly underserved poulation" of adults with severely
limited literacy skills, and this population does need to be named and
acknowledged in order to get funding and create appropriate materials
and systems. * So obviously those efforts should be carried on.

But, what I believe we also need to acknowledge is that once these
materials and systems are created, they are improving the efficiency and
success of the encounter for all patients, not just those with low
literacy skills. This can improve compliance and patient safety for all,
not just the "percentage" of people with low literacy skills. (And as
Audrey so nicely pointed out: the percentage of those with "less than
proficient" health literacy skills was found to be 80% on the NAAL!)

Thus, we could easily argue that health literacy projects can be funded
with funds earmarked for populations with low literacy skills or ANY
population. Patient safety, quality improvement and many other issues
that are well-funded should also be available to many HL projects.


* We need to remember that it's not just the materials, but also the
system of delivering them, evaluating them, and ensuring that they are
effective at helping patients take action to improve their health. For
example: if you hand out a well-developed easy-to-read piece of
information, you still need to use the teach-back method to make sure
the patient understands the basics, that they actually do use the
material to remember the information, and that they are able and willing
to take the actions instructed in the material. Sometimes we seem to
think plain language materials is the main goal, but it is really one
step in a larger process of improvement.

Julie

Julie McKinney
Health Literacy List Moderator
World Education
jmckinney at worlded.org
>>> Wendy Mettger <wmettger at mindspring.com> 11/06/09 1:21 PM >>>
Hi all,

Julie, I absolutely agree with your recommendations about broadening the

concept of health literacy and including health care providers and
systems as part of the change process. I have long been an advocate of
removing the "labels" applied to certain individuals, groups,
communities, populations, etc.

Here's the dilemma that I see. Labeling has served an important historic

function to draw attention to "less visible" populations. When I
established a communications program for people with "limited literacy"
skills at the National Cancer Institute back in the early 1990's, it was

designed to draw attention to a terribly underserved population. At the
time, the vast majority of NCI publications and research interventions
were targeting populations with strong reading skills. Part of the
reason for using terms like "limited literacy" or "low literacy" was to
draw attention to populations who typically were not on the radar screen

of public health officials and practitionmany health researchers, professionals, and practitioners didn't see or
acknowledge the existence of people who had different skill levels from
their own.

I see how labeling continues today. The Health Literacy Research
Conference in Washington, DC this past October featured a number of
presentations about research into new methods to measure health literacy

skills of patients. Many of these efforts are funded by NIH. The issue
is that the "labeling process" is part of what generates a funding
stream. My question is how can we remove the labels and stigmas attached

to those labels and still ensure funding of important research that
looks at the need for improving the health literacy skills of our health

care professionals and access to and navigability of our health care
systems?

Wendy

Wendy Mettger, M.A.
President, Mettger Communications
Co-founder and Principal, Clear Language Group

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