[HealthLiteracy 4268] Re: Calgary Charter, and HL as Health behavior Model (Principles forhealthliteracyandavoidlabeling)

Picking up on Carol's comment and many  of the deeply thoughtful posts from the past two days, I want to share a recent initiative from British Columbia entitled Patients as Partners.  This was an action research project directed by a collaborative called Impact BC that started from the perspective of patients/clients and linked them to a provincial Charter on primary health care.  It  has produced a set of health Literacy in Communities Core measures which suggests measure for both communities and health care providers. It also created a diagram entitled  Health Literacy Umbrella that integrates all the issues they identified as the spokes in an umbrella.  You can find these and other papers and tools at http://www.impactbc.ca/PatientsasPartners/resourcesforregionalteams.

This is another example of Hl work that tries to address both client and providers.

Linda

On Tue, 9 Mar 2010 21:14:13 -0800, Carol Collins wrote

> Andrew: 

>   

> I will make the argument for engaging patients up front based on our research. Our original plan was to develop a prototype medication information resource and then evaluate it. Due to external circumstances, we ended up using mockups of our prototype with focus groups. I worked on information format, readability and actionable content (such as if find out you are pregnant, call your doctor immediately because this medicine may harm your baby). But while the focus groups appreciated the mockups as compared to standard medication sheets, they objected strongly the risk management language that wasn't even on my radar as an issue because I was so used to seeing it (ex. drug x may cause muscle pain). Once they brought the issue up, it became obvious...what are they supposed to do with that type of information? 

>   

> Patients today have more alternatives. Our subjects preferred to obtain their health information from trusted friends because they felt they would get a truer picture of how the disease or the medication might affect them. So now we see websites such as PatientsLikeMe expanding expotentially. 

>   

> So, to bring this back to health literacy evaluation, if usability is part of the evaluation of health information...have we determined the essential elements of health literacy from a patient perspective? 

>   

> Carol 

>   

>  



> ----- Original Message ----- 

> From: Andrew Pleasant 

> To: The Health and Literacy Discussion List 

> Sent: Tuesday, March 09, 2010 5:00 PM 

> Subject: [HealthLiteracy 4251] Re: Calgary Charter,and HL as Health behavior Model (Principles forhealthliteracyandavoidlabeling) 

> 

> Hi Carol,

> 

> In the model put forth in the Calgary Charter, the trust and value people find that you refer to so well Carol, will be developed (or not) in the evaluate stage. 

> 

> I suspect an important difference in emphasis is that because that approach does not call for an “appropriate decision” as an outcome but instead an “informed decision” it is incumbent to evaluate / measure just the sort of situation you described when using that theory of health literacy. The multi-layered logic model essentially – if measured robustly – would insist that what you described would be captured by the methodology used.

> 

> Worth adding I hope, the model can be applied to the health care professional side of the health literacy equation as well – when drafting the Calgary Charter we did find it possible to develop a single definition that could be applied equally to both sides of the health literacy equation.

> 

> Andrew Pleasant

> 

>  

> 

> On 3/9/10 12:55 PM, "Carol Collins" <carolc3 at u.washington.edu> wrote:

> 

> 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 <mailto:pleasant at AESOP.Rutgers.edu>  

>  

> To: The Health and Literacy Discussion  List <mailto:healthliteracy at nifl.gov>  

>  

> 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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>  

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-- 
Linda Shohet, PhD 
Executive Director 
The Centre for Literacy of Quebec 
2100 Marlowe Avenue, Suite 236 
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