[HealthLiteracy 3737] Re: Principles for health literacyandavoidlabeling

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Susan Koch-Weser susan.koch_weser at tufts.edu
Wed Nov 18 16:03:27 EST 2009


I think the H1N1 case will be very interesting to follow. How will
future communications be received by people convinced by vaccine
promotion efforts that: 1.) they are at risk, 2.) but there is something
they can do about it, 3.) it won't cost them too much, and 4.) they will
get specific benefits... But then they also hear "actually we don't have
any vaccine right now, but get on this list and we have no idea when it
will come, it is very important to get the shot." Beyond the basics in
the case of H1N1 also includes some understanding of the public health
infrastructure and political processes. Not to mention some skill at
systems navigation (and potentially the need to rearrange schedules to
bring a kid to a daytime clinic on very short notice - like I did today).

Susan Koch-Weser

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 hea lth 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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>

>

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--
************************************************
Susan Koch-Weser, ScD
Assistant Professor
Department of Public Health and Community Medicine
Tufts University School of Medicine
136 Harrison Avenue, Boston, MA 02111
617-636-4033
*************************************************