Summary Panel Discussion: Communication Between Patients and Health Care Providers

Full Discussion

Hello Everyone, and welcome to our panel discussion: Communication
Between Patients and Health Care Providers!

We have a great team of panelists, including two adult learners, two
literacy teachers, two physicians who have done a lot of good work with
health literacy in their settings, and a health educator who has
addressed literacy issues in her work as well. They will discuss the
challenges and supports to communicating with health care providers for
adults with lower literacy skills.

See below for more information about them and this discussion. I look
forward to hearing from everyone!

All the best,

Julie

 

Hello all,

I am thrilled to be a part of the discussion this week!

I am an Ob-Gyn and have a background in education. I have worked in community health centers for many years and have seen first hand the impact of health literacy on the health of my patients.

There is such wonderful literacy work going on, and I've seen so much passion and commitment on this list. The chance to learn from people working in health literacy from so many different angles is exciting.
I hope I can provide some insight from my experiences on the doctor-side of things. I look forward to learning from you all and your experiences.
There is a lot of discussion about what can go wrong in the communication between doctor and patient. I thought it might be interesting to flip that conversation on its head. What good or great things have you seen? What can we learn when things go well?

Lisa

 

INTRODUCTORY REMARKS

My name is Anne Zettek-Sumner and I'm delighted to serve as a panelist for
this week's discussion. My goal is to pose questions that may spark
consideration of practical factors involved in health communication. I'll also offer
concrete suggestions when I can. Please keep in mind that my remarks derive
from my experiences as a Registered Nurse and health educator, a patient, a
parent, and health care proxy/advocate for several family members.

I want to discuss health communication variables in the larger sense. To
start, I'd like to suggest that we keep in mind the SETTING in which the health
communication occurs. What are the differences and similarities, challenges
and opportunities, that arise strictly from the setting? Focus not on the
content of the interaction, just the setting. Imagine how the setting itself
can impact communication. (Later, we will layer on additional aspects of
communication, along with suggestions.)

Think about the following settings:

  • doctor's office with desk/chairs/diplomas on the wall/door open or
    closed
  • exam room with paper johnny on/nurse practitioner is fully clothed
  • pediatrician's exam room for your baby's visit - you also have your
    toddler in the room with you
  • school nurse's office
  • lying on a stretcher just before going in to surgery
  • waiting room where families meet with surgeon after surgery
  • in a delivery room as you're giving birth
  • emergency room with curtains separating you from a crying pediatric
    patient on one side while the patient on the other side is moaning
  • employee health office at your place of work
  • at large health fair or flu shot clinic
  • at the window of your local pharmacy - (maybe even the drive-up window?)
  • in a group medical visit
  • in your home during a visiting nurse visit

Consider how each setting might affect the communication process - even when the content of the message is identical. Are there features of certain settings that make for better - or less effective - communication? Can awareness of these features lead to adaptations in communication strategies?

This is just a start - let's later add layers of complexity and then, ultimately, drill down again so that each individual communication experience is most effective.

Anne

 

And add to the stress of those situations a less than stellar understanding of basic English, and/or being deaf!

Mikal Steinbacher

 

Add to these situations being visually impaired, blind, deaf, learning or
physically disabled. Add to these situations, not being able to see who is
the doctor and who is in the room to empty the trash can. Add to this, not
being able to fit into these rooms for an exam or not being able to receive
your examination on an examination table. Add to this, not being able to
read any of the material or sign any of the consent forms. Add to these
situations not being able to comprehend what is going on for so many
reasons.

Valerie

 

I'm really looking forward to participating in these discussions. I teach ESL students English skills and I also teach a health care "bridge" course that is designed to help ESL students move into the health care fields. I hope to glean some good ideas for both courses!

Mikal Steinbacher

Instructor, ABE/ESL/English

Lake Washington Technical College

 

Anne brings up a good point about the setting. There are so many challenges that common health care settings add to the communication piece. It has been shown, I believe, that emotional stress alone can affect comprehension and recall of information, even for highly literate people. (It would be interesting to see if various states of nudity would have a similar effect, but I haven't seen any studies on that.)

The distraction of chaotic goings-on in an emergency room, waiting room, delivery room, etc. would also effect clear communication. Pulling a curtain, shutting a door...things like this could help.

Another big one in my experience is time. When I feel a very strong sense of the doctor being in a big hurry, I tend to ask less questions and say less in general. Once I saw a specialist (after waiting two hours) and during his five-minute explanation, the fact that he did not even sit down made me so uncomfortable that I didn't ask or clarify anything. I find that any way to give the illusion of having a bit of time (even if you only have five minutes) is helpful. When the doctor simply sits down, this is a huge improvement. Making eye contact is also a huge help!

Julie

 

But Julie --

The point of "setting" that was raised may be a good one to consider. But as a patient ... do you feel you had any control over the "setting" you spoke of in your example? You are a well-versed and knowledgeable patient (or parent of a patient) and are aware that these external limitations to open communication affect how you asked your specialist doctor questions. You probably overcame the dilemna.

Now for a mili-second ... put the uncomfortable "shoe on the other foot" and pretend you have limited communication and literacy skills and pretend for a moment that you lacked the self-confidence to leap over this barrier created by a setting that's causing inaccessibility. What would be your reaction then? Would you grab that specialist by the arm and ask your probing question? Or would you look down into your naked lap and let him/her go on their way?

Personal experience for me was that my OB/GYN dashed out the door, looking at his watch, writing into my record clamped to the file folder as he left and as I extended my hand toward him with a "but ..." question. I never even got close enough to grab his sleeve.

I feel sorry for adult learners in their desire to have their health condition treated and to get their questions answered more than adequately and with respect. It's rough to get there for some. Let's not let "the setting" be the excuse for a lack of caring spirit. Because the doctor (i.e., health care agents) are the ones who control that. Right?

Nancy Hansen

 

The setting is one of the things we have kept in mind when developing
our health materials. While we originally focused on helping refugee
populations in clinical settings. These patients are mainly
non-English speaking and many times, due to chaos in their home
country, have had little access to formal education so may not read
in their native language. Translated written materials may not be
too helpful. We look at ways that technology-based strategies might
be useful in helping to meet these information needs. Being able to
listen to or watch a presentation is sometimes helpful in providing
more meaningful information access than written materials. However,
written materials are almost always important for people with any
level of reading ability as there is usually a circle of "readers"
around someone who can't read well. They help them navigate the
challenges of everyday life which necessarily involves dealing with
written materials. Having a take-home health information handout of
real benefit to share with family.

Feedback to our site indicates that the multiple formats provide
materials that are useful in many settings - clinical, home-visits,
senior centers, adult education classes, hospitals, ESL classes,
correctional health, etc. We are currently working with a public
health department to explore the use of iPods in outreach
settings. They are small, easily portable and can hold hundreds of
short videos. We are also working with lay refugee health mentors
using small portable DVD players. The changes in consumer
communications technologies, such as iPods, hold great potential to
help meet information needs of our increasingly diverse and aging
population but we in the healthcare field have a long history of
lagging behind taking advantage of these technology tools. This means
that there is a lag in support for the development of health
education content for these tools. In turn, this leads to little
interest in providing training in to health information providers of
all kinds (doctors, nurses, lab personnel, respiratory technicians,
etc.) in using these information technologies. A bit of a chicken
and egg problem. It would be interesting to hear from others who are
exploring ways that the challenges of literacy and health literacy
can at least partially addressed with some of these strategies.

- Mary Alice

Mary Alice Gillispie, MD

Healthy Roads Media, Director

 

I'm new to the list, but I've been reading a lot of the discussions and thought it was time I start contributing. I work for Marshfield Clinic (www.marshfieldclinic.org) in Marshfield, Wisconsin. My main responsibility is working with a team of physicians and providers to write and publish clinical practice guidelines. I also help write patient education materials as companion pieces for our evidence-based guidelines.

Marshfield Clinic is currently one of ten sites participating in a physician group practice CMS demonstration project. We developed extensive clinical practice guidelines for the management and treatment of chronic disease (hypertension, heart failure, diabetes, and dyslipidemia) within the primary care setting. Corresponding patient education resources were developed on these topics. Each is about a 30-page booklet, but they can also be printed as a series of individual handouts.

Because this is part of a CMS demonstration project, we closely followed the recommendations in the CMS guide "Writing and Designing Print Materials for Beneficiaries." By now, most of us interested in health literacy are familiar with the recommendations for choosing fonts, writing shorter sentences, using plain language, etc. By following these recommendations, we were able to produce patient education books divided into 4 main areas: 1) an overview of the chronic condition (what is high blood pressure? how is it treated? what do my numbers mean?), 2) an extensive section of lifestyle modification (including DASH diet, tips for reducing sodium, and stressing the importance of physical activity), 3) a shorter section on pharmacologic therapy (overview of medicines to manage high blood pressure, safety tips for taking medicines, "my medicines" work sheet, etc.), and 4) self management tools and resources (how to take your blood pressure at home, tips for purchasing a blood!
pressure monitor, home blood pressure monitoring log, etc.). Each of the four books follows this structure.

We did use a lot of information from NIH, but rewrote much of it. Our final products average a Flesch-Kincaid reading grade level score of 7.7. We used the word "hypertension" in the beginning section because we feel it's important for patients to see and hear that word (because their doctors use it often), but we made sure it was clear to the patient that hypertension and high blood pressure mean the same thing. In our medication section, we explained the different classes of drugs (ACE1, ARBs, diuretics) and provided the generic names of drugs, again because we felt it was important for patients to have this information. We worked hard to write simple explanations of how each medication works.

We print 1500-2000 copies at a time (we have our own in-house print shop and Graphic Arts department) and in between each printing, we work on each section and always find one or two sentences here and there that could be improved.

My point is, you may never find that one perfect piece of patient education that includes all of the information you want to give to your patients, and be written at an appropriate reading grade level. The information from the NIH is a good place to look., but you may need to rewrite some of it.

Don't just rely on a reading grade level score either. If you work hard enough, you can get any piece of education down to 5th or 6th grade level. It may require taking out all medical terms and names of medications to do it, but I think that can sometimes be a bad choice. An effective education piece explaining high cholesterol and how read the results of a fasting lipoprotein panel, for example, should include the words cholesterol, low-density and high-density lipoproteins and triglycerides. They just need to be explained and defined as simply as possible. All patients, no matter what their reading level, appreciate clear, simple explanations. It may not result in a piece that scores at 6th grade when you run a SMOG, but that doesn't mean it's not a good piece to use with patients.

Doug Seubert

Guideline Editor

Quality Improvement & Care Management

Marshfield Clinic

 

I wholeheartedly agree with this comment. I'm blessed to have a
(now-retired) Special Education teacher with add'l certification in
reading disabilities for a mother - and whose friends also tend to be SE
instructors. They often become an informal set of reviewers for me as I
develop materials, especially with regards to comprehension. If you can
find some willing Special Ed teachers as reviewers, use 'em!

Example: I was working on a booklet about unrelated stem cell
transplant and trying to get it down below 6th grade. I was getting
very frustrated because the medical terms kept "yanking" the reading
level higher than I wanted. I finally brought it to my mom and a few of
her friends, who were extremely helpful with reviewing it and offering
suggestions. Their assessment? It read at 4th-5th grade level (even
though it scored closer to 6th-8th grade) and they were confident that
their students would be able to decode the information and follow the
instructions. Why?

  1. The complicated terms were embedded in a very simple context, so
    readers could infer/decode the meaning
  2. The terms were reinforced through repetition throughout the book
  3. The terms were used in different formats (text, games, glossary,
    audio CD)
  4. Readers had to interact and manipulate the terms in different (and
    entertaining) ways
  5. The design was approachable and upbeat - and didn't look very "medical"

I realized I was getting hung up on the numerical scores and not looking
at the broad content and the main objective - which was for readers to
be able to read, understand and act on the information provided. The
score is just one element of *many* to help determine the
appropriateness of a material.

My mom and her friends/colleagues all stressed the importance of using
the medical terms that they will likely encounter - but compensating for
that issue by surrounding those terms with very simple definitions and
concepts. They also felt that the combination of strategies would help
build confidence and competence - that they could "figure it out"
without having to ask for help or feeling overwhelmed.

Now, whenever I'm starting a new project, the first thing I do is run my
draft project plan past my "Special Ed group" to get their ideas on what
some good messages and learning strategies would be. Then I run it past
them again, once I have the content in place. It is SO helpful to work
with a group of people who not just understand how to assess the needs
of an audience, but to offer very valid strategies to incorporate into
your resource.

Martha Burton Santibanez

Program Specialist - Medically Underserved Populations

National Marrow Donor Program

Office of Patient Advocacy

 

I work in the areas of health education and health advocacy in the Deaf Community in Minnesota. I work with two Projects: Deaf Hospice Education and Volunteer Project, now in its 8th year and the Deaf Community Health Worker Project now in its 2nd year. Both projects are community-based --or all Deaf (I am hearing but bilingual). We have 10 Deaf people who are trained hospice volunteers/advocates. The Deaf Community Health Worker is the first Deaf person to serve in that role. This should give you some idea of how far behind this population is in terms of health knowledge. Conversations about health literacy usually do not include the Deaf Community, so I hope I can add a new dimension. For starters, most hearing people do not know that there is NO connection between American Sign Language and the English language. "American" refers to the language used by Deaf people in North America. English words mean nothing unless there is some past experience a Deaf person can "hook" the word too. English is their 2nd language and the average reading level remains at the 4th grade level.

Though generally recognized as a cultural/linguistic minority, this population does not fit into the racial/ethnic classification used for funding and research (though Harlan Lane argues that the cultural anthropological definition does fit). There is no national nor state health data base, ASL is not included in the US Census. Community Health Workers are the "brightest light in the tunnel" for this population...plus increased awareness on the part of health professionals and people in the field of health literacy.

The Deaf Community Health Worker has added volumes to our overall understanding of the background knowledge that is missing within the general population. In Minnesota, the Community Health Worker movement is growing fast. The potential for learning from people in this field should be tapped--for all linguistic minorities. Two articles that come out of our work in the hospice field might provide more insights into some of the challenges faced when working with this population in the health care setting.

I look forward to being part of this panel and finding resources that can be adapted for the Deaf Community.

  1. Barbara Allen , Nancy Meyers, John L. Sullivan, and Melissa Sullivan, Disability and Health: Best Practices in Conducting Disability Surveys Volume 2, 2005, Chapter 5, "Using American Sign Language in Assessing the End-of-Life-Care Educational Needs of Deaf Persons: Lessons on Language, Culture, and Research Practices," Nova Science Publishers in Hauppauge, New York
  2. Barbara Allen , Nancy Meyers, John L. Sullivan, and Melissa Sullivan, Sign Language and End-of-Life
    Care: Research in the Deaf Community," Healthcare Ethics Committee Forum: An Interprofessional
    Journal of HealthCare Institutions' Ethical and Legal Issues.
    " 14:3 (September) 2002. 197-208

Nancy Meyers

 

Nancy, it sounds like the average deaf person would also benefit greatly from easily read heath care/disease prevention information, just as ESL students would. I have to admit that I did not know that statistic, or the that English is a second language to the deaf as well!

Thanks for the information!

Mikal Steinbacher

Instructor, ABE/ESL/English

Lake Washington Technical College

 

FYI, the University of Washington School of Medicine and their
hospital on campus have some innovative programs around this issue.
As I understand it, the Seattle area has one of the highest
populations in the country of people who are hearing impaired.

Kristina Anderson

EasyRead Copywriting, LLC

 

It may be true that some areas, geographically and demographically, have
larger numbers of any given population. All of that is irrelevant. Whether
there are 10,000 people with a a particular disability or "just one",
appropriate and effective communication options are imperative.

Valerie

 

Yes this is true. Rochester New York may be larger as well as Washington DC.
For people who are culturally Deaf --use sign language for communication, the term hearing impaired is anywhere from "not acceptable" to "insulting" ...it assumes that the right way to be is hearing and that they are impaired because they can't hear. They are at a disability when they are communicating with members of the majority culture. Hard of hearing is the correct way. D with upper case "D" refers to culturally Deaf people. I had the privilege of caring for a 29 year old Deaf woman who died of colon cancer. We requested her medical chart because her two young hearing children may want to know about her illness later on. In the chart, nurses and doctors continued to refer to her as a "deaf-mute" -- a rare condition. That is a term that dates back to the 19th Century and should never be used in reference to a Deaf person. It is one step away from "Deaf and dumb" which preceded it. In the chart the proper way is within the context of the social and family information. Patient is Deaf requires a sign language interpreter.

Nancy Meyers

 

Several years ago when I attended IHA's Health Literacy Conference, we were
told that the Flesch-Kincaid in M/S Word is not reliable. The results are
approximately two grade levels lower than the actual grade-level of the
document. Since then, if I use it, I keep this in mind.

Rebecca Metternich

Central Illinois Adult Education Service Center

Western Illinois University

 

I have heard this as well. More recently someone told me it's a little
better now but I have not checked. But it's always a good idea to do
some kind of formula the old-fashioned way when it really matters. It's
not that hard.

Janet Sorensen

 

YES. Even the CMS guide I referenced (Writing and Designing Print Materials for Beneficiaries) says that the Flesch-Kincaid reading grade level score in MS Word is usually 2 grades lower than the actual grade-level of the document. I usually do a SMOG (by hand)when I want a more accurate reading.

But using Flesch-Kincaid in MS Word can still be helpful, in that it is a tool almost everyone has access to. Our organization is rather large, with nearly 750 physicians practicing in 41 (soon to be 47) clinics in the northern half of Wisconsin. Each center, each department can purchase or create patient education materials. Up until now, most of what was developed never went through any evaluation, except to make sure the logo was in the right place. Over the past 2 years, we have been working to standardize our patient education materials, creating them as companion pieces to our evidence-based clinical practice guidelines. While we work on standardizing patient education materials, there are still letters, brochures, newsletters and other print materials that are sent to patients that are not always classified as patient education, but should still be evaluated for health literacy.

We're trying to raise awareness of health literacy and provide recommendations for improving how we communicate with patients. Even if I can show some of our staff how to use Flesch-Kincaid in MS Word, it's a step in the right direction, and it gets them thinking about how they write and how they can improve their writing. If you aim for a score between 4th and 6th grade, your piece will most likely be 2 grades above that. But as I said in my earlier post, it may be impossible to get a low score if you have any medical terms in your piece. You can rewrite "make modifications in your food choices" (11 syllables) to "change what you eat" (4 syllables) and get a better score and improve your piece. But there isn't a simpler word for triglycerides. And you actually need more words to define it and explain it, which can raise the score.

As far as the accuracy of Flesch-Kincaid in MS Word, there are several things that can affect the score. Bulleted lists of information often cause trouble, especially if there is no punctuation. You can have a list of symptoms, for example, and Flesch-Kincaid in MS Word will read the entire list as one sentence, and include the next sentence as well, because it's looking for the next period and treats everything written between the periods as one sentence. As readers, we often put in the punctuation even when it is not there. When we read a bulleted list of words (symptoms, for example) or phrases (actions steps or safety tips, for example), we process them as separate sentences or thoughts, even if there is no punctuation (periods) after each item in the list. When you run Flesch-Kincaid in MS Word, put in the periods (you can always remove them) after each item in the list and you'll get a more accurate reading grade level score. This is just one of many tips for improving!
the accuracy of Flesch-Kincaid in MS Word.

We can't solely rely on a reading grade level score when we evaluate written patient education for health literacy. Flesch-Kincaid in MS Word, nonetheless, is often still worth doing.

Doug Seubert

Guideline Editor

Quality Improvement & Care Management

Marshfield Clinic

 

Our rule of thumb is this: If 10 Deaf people can read it, sign it and explain it to someone else it is clear. If not, they work together to figure it out and we use what they say. Some funny examples:

Most healthcare directives will talk about "Choose your healthcare agent." First, the English word "choose" is translated into decide which is close to decision and judge...gets people wandering off in the wrong direction. The result: we changed it to "pick." "Agent"...what's that?? movie star agent, basketball agent for Nike's?? We never even bother to say that an "agent" is a "person!"

So we ended up saying "Pick the person you trust." But as hearing people we often feel embarrassed to use such simple words...also American Sign Language is not built on a Thesaurus...there is one sign for pain, there was no sign for hospice until 5 years ago when someone in Minnesota (A Deaf person) made one up. All adverbs and adjectives are made with grammatically governed non-manuals, or facial expressions. They go nuts with the Wong-Baker pain scale of "smiley faces"... what does a happy face have to do with pain?

Once at a meeting two hearing people were arguing about the different between "ensure" and "insure." A Deaf person asked: what's it mean?? "to make sure." "Well, why don't we just say that!"

The scales are helpful, but if we do not test them with the people we expect to read them we are continuing to throw money out the door. Also, it is empowering and word spreads fast in tight-knit communities that they actually are being consulted. Do a big promo piece on including the community in developing materials. It has amazing results. Most Deaf people don't even bother to pick up brochures, regardless how simple we think they are...after years of everything being written so far over their heads they just throw up their hands and say "forget it."

We need to let them know that the brochures are different...but we must find a way to also learn from them about what they don't know or understand...

Nancy

 

Hello Douglas: You are right, in doing some testing of materials with Flesh-Kincaid vs. using the Fry Graph in the past; documents I tested scored 2 or 1.5 grades lower with FK. We can't explain how Flesh-Kincaid really works. Some of the reasons you mentioned may be true, as well as that it also treats abbreviations like Dr. as very short sentences. These features together skew the reading level score. This is why health literacy experts traditionally preferred other tools such as the SMOG and the FRY even if it took longer doing the count by hand.

It is also true that we should not rely only on looking at reading levels but at a combination of all principles of plain language writing. As others are pointing out, we need to include cultural issues and audience prospective, which help make materials accepted and believable.
Also, defining and explaining terms like "triglycerides" work better than having the term by itself. However, you need to create short sentences and use simple language in doing so.
In helping those in the field to create easy to read materials we created the Health Literacy Advisor (HLA) an interactive software tool, which includes 6 different electronic readability indices including the Fry based and a revised Flesh-Kincaid. This tool takes the issues mentioned before into account. For example, the HLA does not count bullets, headings, subheadings, abbreviations, phone numbers, websites, etc.

The good news is that the user will have a more accurate reading level score while saving time using the Fry based electronic tool. Also, the HLA has more than 11,000 health and non-health words that have been simplified, including major diseases, procedures, health insurance terms, medications and many more.

All we have to do now is to find a way to get it on the hands of all those producing health literacy materials and programs, specially the non-profits. In an ideal world, this tool along with a good training will help build organizations' capacity.
If any one has an idea please let me know. To find more about the tool go to: www.HealthLiteracyInnovations.com

Aracely Rosales,

President, Plain Language and Culture, Inc.

 

Hi all,

I am a professor of health communication and have created graduate programs in health and risk communication at my prior insitution (George Mason U., Fairfax, VA) and now my current institution (Chapman U., Orange, CA). I joined this fabulous listserve a few months ago and am learning much from all of you...thank you!

In short, we often don't pay attention to the ways in which architecture, setting, prior experiences and relationships impact the current health care communication exchange of information, message processing and understanding, identity, listening, enactment and evaluation in and of health behavior(s). There is SO much to say regarding health communication and its importance. For example, a JCAHO report in 2002 stated that root cause analysis finds that 80 percent of medical errors were due to communication breakdown(s). I find that when I tell people what I study and then reveal this kind of data they seem to understand immediately the importance of the role that communication plays in potentially saving lives.

I have a few new books just out on this week's topic of health communication that might interest some of you. The first book "Health communication in the 21st century" barely touches on health literacy specifically, but it is my hope that we can build this area of research in future editions. The other two are edited books that provide a "who's who of prominent health communciation scholars" although the context is specifically focused on the cancer care environment.

Wright, K. B., Sparks, L., & O'Hair, H. D. (2007). Health communication in the 21st century. Oxford, England: Blackwell.

O'Hair, H. D., Kreps, G. L., & Sparks, L. (Eds.) (2007). Handbook of communication and cancer care. Cresskill, NJ: Hampton Press.

Sparks, L., O'Hair, H. D., & Kreps, G. L. (Eds.) (2008). Cancer communication and aging. Cresskill, NJ: Hampton Press.

Kudos to this important and informative listserve....keep it up!

Looking forward to hearing your thoughts and experiences in the powerful role of communication in health care environments.

All the best,

Lisa

LISA SPARKS, PH.D.

Editor, Communication Research Reports

Professor, Chapman University

 

Hi Julie

The last four years the New Readers of Iowa have had four different
health literacy conferences. We have partner with The Iowa Health system
for the last three years we have had our health literacy conferences
together. Each year the New Readers of Iowa have made a health literacy
statement. Below is the statement from the New Readers of Iowa May 2007
Conference, I hope this is useful for you discussion.

Representatives of the 17th Annual New Readers of Iowa Literacy
Conference ask health professionals in all fields of practice to create
a shame-free environment for all patients those with low-literacy
skills, new readers, and patients for whom English is a foreign
language. Specifically we recommend the following systemic changes.

  1. Integrate these concepts and materials into your practice.
  2. Create an environment where patients are encouraged to get involved in
    their health care-allow patients adequate time with providers and
    eliminate shame associated with literacy issues.
  3. Use the "Teach Back" method to ensure patient understanding of medical
    instructions-review instructions both verbally and through written
    materials, ask patients to verbally repeat back instructions, and review
    risks of not following through with prescribed treatments.
  4. Invite patients to ask providers questions to increase understanding.
    Use the "Ask Me 3 program to encourage patient to understand the answers
    to three questions: What is my main problem? What do I need to do? Why
    is it important?
  5. work with professional colleagues to further disseminate health
    literacy information and materials.
  6. Where possible reduce bureaucracy so it is easier to receive medical
    treatment. Reduce the paperwork necessary to initiate medical treatment.
  7. Make required paperwork easier to understand. And provide sham-free
    opportunities to review verbally.

Archie Willard

New Reader from Iowa

 

Do you have references on the "Teach Back" method?

JN Brownstein

 

The American Medical Association has some information about the teach-back method in their manual for clinicians, part of their health literacy toolkit. A new edition just came out and you can download a free pdf of the manual at http://www.ama-assn.org/ama1/pub/upload/mm/367/healthlitclinicians.pdf. (see page 33).

See also:

Journal Articles

Schillinger D, Piette J, Grumbach K, et al. Closing the loop: physician communication with diabetic patients who have low health literacy. Arch Intern Med. 2003;163:83-90.

Villaire M, Mayer G. Low Health Literacy: The Impact on Chronic Illness Management. Professional Case Management. 12(4):213-216, July/August 2007.

Williams MV, Davis T, Parker RM, Weiss BD. The role of health literacy in patient-physician communication. Fam Med 2002;34:387.

Bertakis KD. The communication of information from physician to patient: a method for increasing patient retention and satisfaction. J Fam Pract. 1977;5:217-22.

Books

Doak C, Doak L, Root J. 1996. Teaching Patients With Low Literacy Skills. 2nd Edition. JB Lippincott Co.: Philadelphia, PA.

McPhee S, Papadakis M. Tierney L. 2007. Current Medical Diagnosis & Treatment. 46th Edition. McGraw-Hill.

Doug Seubert

Guideline Editor

Quality Improvement & Care Management

Marshfield Clinic

 

"In short, we often don't pay attention to the ways in which architecture, setting, prior experiences and relationships impact the current health care communication exchange of information, message processing and understanding, identity, listening, enactment and evaluation in and of health behavior(s)."

Thanks, Lisa, for your comments.

I'd especially like to thank you for the statement I've copied above - it very clearly points to the spectrum of facets having an effect on communication. Specifically, we are talking about health communication, and this week, mostly about the 'dialogue' between providers and....(what term(s) should we use?)...patients....consumers...individuals?

Anne

 

Hi Anne,

Thx for your kind words. Terms are so tricky.....a few years ago the rage was to use consumers and providers, but now using the word consumer has people all upset because we are more than consumers...yadda...yadda. I have been seeing more patient-provider terminology being used lately, but that can have its set of problems too.

All this said, I am comfortable with the terminology health care consumers, patients, and providers....it doesn't really bother me because I think we have bigger fish to fry navigating the health care system in more efficient ways so each patient and family member can make informed decisions based on reliable information exchange, rather than on conflicting and insufficient credible information. Essentially, we must get to the heart of the problems involved in message exchange, which I would argue exist in the relationship between provider(s) plural (not just the dr.) and patients/consumers as well as their loved ones. Building relationships (even for a 7 minute appt.) can make a huge difference in health outcomes and enactment of healthier behaviors. In other words, if I like and respect what the health care team communicates with me on a continual basis with little conflicting information, I perceive them to be more credible and thus, will be more apt to engage in the prescribed protocols. For example, today I was at the dreaded dentist who is very patronizing and tells me to relax over and over again. This is not helping the anxious patient at all. Then, he remarks on how I don't need to pinch myself but I just need to relax. I tell him that I have been going to dentists for more than 35 years and know by now what works for me to get through the appt (i.e. the pinching of my hand while they give me a shot). It is a silly trick I play on myself and it works for me. This is what I would call tailored communication (tailoring the message) to the patient. Acknowledge that not all patients are alike and tend to have unique ways of handling things. These unique approaches should be embraced and applauded to relax the anxious patient rather than degraded and trivialized. Because, if I were comfortable with needles and blood I would have chosen that profession. Instead, I am a university professor who studies health care communication environments and relationships. Health care providers need to understand that patients tend to be incredibly uncomfortable in the health care environment and that impacts their ability to process messages, understand messages, ask appropriate and relevant questions, listen, etc. On my way out of the dentist's office, I asked him why my other crown was so sensitive. Instead of looking at me and listening to me, he walked past me, picked up a light bulb and started screwing it into the ceiling. I walked away toward the front desk...then he followed me and gave an insufficient answer (basically, get over it). It was his approach that was frustrating, not the information about the crown. Needless to say, I am changing dentists asap.

Finally, it is important to understand that disease and poor health are not an individual matter, but are most often a family matter, and/or a greater social network matter. We have embedded health behaviors that we learn from being part of a family, part of a community, etc. We are sick not as individuals, but as part of the larger systems we are a part of.

These thoughts are obviously just off the cuff, so I am sure I make more sense in my book (i hope), but I hope you can get a sense of what I am trying to convey as my screaming children (n=3) call for me to finish the Italian pasta dinner I am prepping for my Italian husband (feeling brave tonight:), before he goes in for surgery tomorrow (we hope it is not the last supper)!

All the best,

Lisa

LISA SPARKS, PH.D.

Editor, Communication Research Reports

Professor, Chapman University

 

Anne- I think your comments on location/setting are particularly important.

We al know that health literacy decreases when a person in a stressful situation. So being in pain, prior to surgery or half naked would limit anyone's ability to understand health information.

Luckily - this is something we, as patients, can help to control. Here are some ideas for handling some situations. I know it can be hard to do...but

  1. Many doctors will try and speak to patients while they are fully clothed. If you want to discuss something, or don't understand something, ask to get dressed first. You may wait a bit longer (usually I try to see another patient during that time) but you will be better able to focus. I do this during my own doctor's visits - I just can't remember health stuff when I am worried about whether all my parts are covered!
  2. The door should NEVER be open during any portion of the visit. If a doctor leaves it open, ask her to close it. This isn't optional - its a matter of your privacy. Your health information shouldn't be discussed in the hallway or anywhere where it isn't private.
  3. If you know you are going to be in a position where you are stressed, scared, or in pain make plans. That could mean asking to talk later or bringing someone else with you.

These are just some initial thoughts. What other ways of handling these situations would you all recommend?

Lisa

Lisa M. Jones, MD

WellLife Education

 

My name is Madelyn Davis. I am a new reader. I'm glad to say I am a
new reader. I've been learning to read for about a year and a half.
The reading that I've learned I'm putting it t o use. I am bipolar
and recently I had a break out with my bipolar. It was hard to
communicate with my doctor. My doctor took the symptoms I told her
that I was having and she came to the conclusion that my medication
was off. Because of the communication with my doctor I felt more
comfortable being treated at home as an out patient instead of being
in the hospital. My doctor worked very closely with me. She called
me every day to ask how the medicine was doing. She came to
understand me and I came to understand her. I think it's very
important that you find a provider that cares about what is wrong
with you. It can be very serious about your health if you can't
communicate with your doctor.

I live alone. I have 3 grown children but none of them can come help
me when I get sick. The fear that I face is being alone.

I volunteer at a homeless shelter for women and I love doing that. I
get a chance to talk to women who are displaced and I watch their
lives turn around. I volunteer on Thurs. and Fri and work there on
Sat. My duties include answering the phone, passing meds. I match
the name of the med on the check-off sheet. The women pronounce the
med for me. I also work the security door. I've been trained to do
UA, the drug testing, and breathalizer. I love working there
because it's like a home.

Before that I was an accounts receivable clerk at Coca Cola for 17
years. I was the lead clerk. I lost that job when it was downsized.
I worked there for 17 years and they didn't know I couldn't read.
They found out when I had to write a report and it was like I copied
it out of a book. My supervisor asked me if I had a problem with
reading. "Yes," I said, "I have dyslexia." My supervisor was very
understanding. "I knew you were doing things verbally. Madelyn. I
knew something was wrong but I didn't know you had problems with
reading."

Madelyn Davis

 

Madelyn,

Thank you so much for sharing your story with us! It sounds like you are working hard to put what you are learning to use, and to take care of your health, which can be a very hard job. It is good to hear about people finding a doctor who cares, calls you at home, and can understand you. I think you have pointed out one big key to communicating better: seeing the human side, and caring about what people are going through.

Just as this discussion was starting yesterday, I took my son to the doctor. His medical issue is complicated and a bit of a mystery, so it is hard to discuss it very clearly. But the doctor started out by saying what a great kid he is, and showed that he really saw him as a person, not just a medical condition. That alone helped me to focus on what he was saying, and that alone helped the communication because I felt we were on the same team.

Thank you for bringing up that point in your story. It sounds like the fact that your doctor cares about what you are going through and can tell you that helps you to have a good connection. And having a good connection as people helps us all to communicate better.

All the best,

Julie

Julie McKinney
Discussion List Moderator

 

Dear Madelyn,

Just like Julie did, I would also like to thank you for sharing your health care story. It means so much to hear that you have a caring doctor who understands. Thank you for being on this panel and helping all of us.

I'm curious. How did your relationship with this special doctor start? Many adult learners do not have the kind of care you do. Tell us all about who began talking about your bi-polar condition. How did it begin? Did you ask about a sign you had that you were sick - a symptom that something was wrong? Did you even know your symptoms were something as serious as having bi-polar disease?

I was excited to read that you work with needy adults also. So are you talking with them about ways you began to get help with your own doctor? That would help them to be brave about their own relationship with a health care person. Thank you for telling us about this part of your life, too.

We will learn a lot from those who walk in the shoes of a learner --

Best Wishes,

Nancy Hansen

 

These are Madelyn's answers to Nancy Hansen's excellent questions:

Nancy: I'm curious. How did your relationship with this special
doctor start?

Madelyn: I changed doctors because the first one I went to was not
compassionate. I asked my social worker for another doctor's name.
She gave me that doctor's name. If your doctor isn't compassionate
to listen, then you have to change. It was scary but I did.
It started by talking to her. I told her I had dyslexia and I
needed more time for her to explain to me and I asked her if she
could do that. She agreed to do that.

Nancy: Tell us all about who began talking about your bi-polar
condition. How did it begin? Did you ask about a sign you had that
you were sick - a symptom that something was wrong? Did you even
know your symptoms were something as serious as having bi-polar
disease?

Madelyn: Yes, I knew it was more serious. You got to know yourself.
Even if you have to take notes. I journalled. Sometimes jus on the
calendar: "Today I'm not doing good. Today is not a good day, I'm
not feeling good. Sad about this." or "Feeling good today. Feel
like I can go out today." Who knows you better than yourself? You
have to take the initiative. You have to know what's going on with
yourself. Your body will talk to you.

At first I didn't know I had bi-polar. In the 70s they didn't have
that term. I was labeled manically depressed. And I wasn't seeing a
doctor about this. I remember my mother trying to take me to an
institution because of my depression. I noticed that I had extreme
highs and lows/severe mood swings. There were some days I felt I
could do anything I could look for a job and other days I couldn't.
I was too weak and lonely to do anything. Then I was in a group
setting with women who were depressed and some talked about bi-polar.
My medical doctor then said, you're not manic depressed, he told me I
had bi-polar symptoms. Once I took time to explain to my
doctor/expressed to him my situation, then I was diagnosed bi-polar.

Nancy: So are you talking with needy adults about ways you began to
get help with your own doctor?

Madelyn: Yes I am. Some of the girls do have similar depression.
When they say I can't make it, I tell them if I can, you can. Do
encourage the girls to keep going and to talk to their doctors.

Anne Murr

 

Yes, Lisa and Anne,

It is difficult to remember that each patient comes with their own environmental backcloth, made up of previous experiences, expectations, hopes and dreams, wishes, fears and phobias (to this day, I cannot LOOK at a syringe), etc. I know that we have already 'established' in previous discussion that each patient is unique, but we should examine how this backcloth as a whole affects patient communication. These factors interact, and do not happen in isolation of the location or its inhabitants. They cannot be viewed as a list. They must be seen as factors on a matrix of dialogue.

For the discussion about terminology:...I have heard many words referring to 'patient'. I head the Consumer Health Information program, I have worked with providers to meet client needs, and I have written patient teaching materials. I have also heard the words 'client' and 'consumer' used in the context of persons with developmental disabilities.

Nicola Davies

 

Quick comment on terminology - although really this isn't that important in the big picture.

I and every other doctor I know detest the term provider. Even worse, some drug ads are now referring to us as "prescribers". (ugh)

In the interest of clear communication - I think the terms "doctor and patient" is understandable to most people.

Lisa

Lisa M. Jones, MD

 

Lisa,

I also like the simple terms "doctor" and "patient", but I worry that if I use "doctor" then I am excluding nurses, radiologists, nutritionists, and the many other non-physician professionals who communicate daily with patients. I do want them to be included in any discussions about communicating with patients. That's when I resort to "health care providers", but didn't think it would be detested! Thanks for sharing your thoughts. Any others out there?

Julie

 

we use health professional

Nancy Meyers

 

Julie,

As a faculty administrator at an allied health college, I work with
faculty to help them work with students who will be entering the
workforce as medical assistants, pharmacy technicians, dental
assistants, etc. and who need to be keenly aware of communications among
patients and, yes, health care providers. I appreciate your efforts to
be more inclusive when discussing health literacy communication issues.

Maureen Lawlor, Ph.D., R.T., (R), (N)

Faculty Coordinator

Pima Medical Institute

 

I can't help continue Lisa's provider/prescriber train of thought. . . Our dilemma is that we employ both Doctors and Nurse Practitioners - and I think it is often in recognition of that fact that we use "provider"-type terminology. Does anyone have suggestions for broader, more inclusive phrasing?

Elaine Garvey, Director of Marketing

North Country Children's Clinic

 

We use "health care provider" often, especially when the patient's care is provided by more than just physicians. But I do use "doctor" when it's clear that only a physician would be handling that part of the patient's care (diagnosing, for example). We sometimes use "doctor" when describing some procedures (a colonoscopy, for example). Using "doctor" is less clunky, especially if your piece repeats "health care provider" several times. Then there is the all inclusive "your health care team." Whatever wording we use, we always try to include the patient, making it clear that they are the most important member of their health care team. In the past, we might have written "your doctor will decide which treatment is best for you." Now we write "you and your doctor" or "you and your health care team..."

In the end, it depends on the topic and scope of your piece.

Doug Seubert

 

Good points, Dr. Jones, but every other kind of health professional that delivers quality health care and essential supportive services feels understandably 'invisible' when the discussion revolves solely around 'doctor and patient'.

In the interest of respect, I hope we can all choose some other words that are more inclusive.

Rhonda

 

I'm glad to see this come up because I hate using a stacked term like "health care provider" all the time (same goes for healthcare provider and health-care provider) or a vague one like "provider." But I would like to see something more inclusive than "doctor and patient" as well, except in a context where the "provider" is definitely a doctor.

Here in Arkansas, some small towns don't even have doctors, just APNs.

Also, we're not just talking about doctors and nurses, but CNAs, discharge planners, various kinds of technologists and technicians and anyone who might need to communicate with patients and their families or caregivers.

I have used "doctor," "provider" and "health care provider." But I'm not completely satisfied with any of them -- too wordy, too vague or too exclusive.

I'm not any kind of a provider. Just a writer and sometimes an editor. (Please don't call me a "content producer"...) I have no personal stake here, other than a desire to communicate clearly with as few keystrokes as possible. I'm interested to hear ideas from actual doctors, nurses and other "health care providers." Also patients!

Janet Sorensen

Senior Technical Writer

Arkansas Foundation for Medical Care

 

Dear Allison, and Lisa, and all,

In response to this thread that started with Dr. Jones "quick comment"
about her dislike at being called a health provider and a consequent CDC
justification.....

Should we break the news to the listserv that there are more nurses
than doctors speaking with patients in this country? If we want to
encourage nurses to identify and intervene on behalf of patients with
health literacy difficulties, calling them doctors or leaving them out
will not do it. The term 'health providers' may not be perfect but it
was born of exclusion and marginalization of those faceless others
providing patient care. The term is embedded in Social Security law,
HIPAA, and other government documents that seem to see us as a team and
recognize that there are many members who provide care. Or we might ask
why in a status hierarchy there is resistance to the leveling of
distinctions....

Charlene Pope, PhD, MPH

Assistant Professor, and, Project Coordinator, Hispanic Health
Initiative

Medical University of South Carolina

College of Nursing

 

we use health professional as well. Provider can be a difficult word to grasp for some.

Linda Rohret

 

We (CDC's Division of STD Prevention) have done communication research
with general adult audiences and found that they too do not like the
term 'provider' (or even 'health care provider'); they associated it
with their health insurance company, which was not seen as a trusted
source. They refer to all providers (regardless of medical degree or
training) as 'their doctor'. Because of this, we typically use the term
'your doctor' in our communication materials for the public, though we
will often make one or two references to 'health care professional' to
be inclusive (and so as not to offend many of the providers who are
distributing these materials).

Allison

Allison L. Friedman, MS

Health Scientist

Centers for Disease Control & Prevention

 

You've made an important point -- we should be writing mainly for our
readers, not for the folks who have to approve our documents. Many
Arkansans call the APNs in their towns "doctors" because, from the
patient's perspective, they serve the same purpose.
Is that an idea we want to reinforce, or should I be concerned about
calling people doctors if they're not? That's not rhetorical -- I'm
really asking.

I'm not just worried about being sensitive to the feelings of other
types of providers. That's not my primary concern -- although sometimes
those folks are a secondary audience. For instance, if the APN in Small
Town, Arkansas, is offended by the use of the word "doctor," he or she
may not hand out the brochure or information we're providing -- and then
all our work is for nothing.

Janet Sorensen

Senior Writer

Arkansas Foundation for Medical Care

 

Hi all -

I think I might need to explain my "provider" comment further.

I certainly see, understand and agree with concerns about excluding other health care professionals. Please don't misunderstand, that is not my intention.

I just think that provider (to describe any one involved in health care) over simplifies the relationship between "provider" and patient.

After all we all do something more than provide. My cable company refers to itself as an "internet provider", my phone company calls itself my "telecommunications provider". Healthcare is differnt than the relationship I have with my cable company. I think that the term provider sounds too much like a transaction. Medicine is, or should be, something far more than just a transaction.

As a replacement for provider, I use "health care team" or "medical team" when talking about groups of medical professionals. Otherwise I use a person's specific title, i.e. nurse, nutritionist etc.

Hope that helps explain my earlier less than clear email.

Lisa

 

I agree -- and "provider" seems to reinforce the traditionally passive role of the patient as well.

Janet Sorensen

Senior Technical Writer

Arkansas Foundation for Medical Care

 

I am finding the discussion regarding the terminology used for those who consume health care services very interesting. I agree that there are perhaps more important issues. Nonetheless, the passive role that is synonymous with the word 'patient' has great significance for the delivery of health care services today.

I too have been challenged when using words like health care consumer or client or health care provider. There has been over the last several years a large body of literature that points to the benefits of a more active and participatory role for patients. For those of us who help people learn about health and healthcare, there is in my opinion a misfit. This occurs between the active engagement required for learning and the passive role that traditionally is assigned or associated with the role of the patient.

Without question, there are times when illness such as critical illness makes it difficult for the person to be actively involved. I agree that illness is a family affair and heartily endorse the need for a member of the family or support person to get involved in these instances. But if we hang on to old terminology, we are perpetuating a role that is outdated today.

Diseases that many people face today are chronic in nature such as diabetes, asthma etc. and people must be able to manage these themselves on a day-to-day basis. To do this successfully, the role of the patient must and is changing and so must the terminology.

Great discussion. Thanks.

Nancy Simpson RN MEd

R.J+ Associates

 

We have heard that public associates the "provider" with their insurance provider. My personal sense is that this is a perception widely held. At least, there could be confusion, and sometimes the context doesn't give you a clue who the writer is referring to. We try to use professional whenever possible in our consumer educational materials, but it is not done agency-wide. For instance, our press office almost universally uses provider.

Cindi Fitzpatrick, BSN

Consumer Safety Officer

CDER Public Affairs Liaison

 

This is Anne:

Thanks to all readers and responders alike! As this is the end of day 2 of our discussion, I'd like to:

  1. highlight some of the points made thus far
  2. add a personal remark
  3. offer my rendition of 'Main Message' (or we could elect to call it something else)
  4. suggest we move the focus to exploration to another aspect of the health communication process (the 'layering' approach I spoke of initially)

I hope that at the end of the week, we'll have a preliminary lists of bullets - some 'reminders', some 'action items' for both providers and patients, etc.

So - here I go....

From Valerie:

Add to these situations being visually impaired, blind, deaf, learning or physically disabled. Add to these situations, not being able to see who is the doctor and who is in the room to empty the trash can. Add to this, not being able to fit into these rooms for an exam or not being able to receive your examination on an examination table. Add to this, not being able to read any of the material or sign any of the consent forms. Add to these situations not being able to comprehend what is going on for so many reasons.

Thank you for reminding us about other challenges such as obesity, mobility issues, and lack of clear identification of the role of the people around you (are they the nurse, the doctor, the housekeeper, the secretary, etc). Keep in mind also that there are many health issues (stroke, eye disease, fever, anxiety...the list is huge) that can alter perception. It seems we are asking people who are already stressed to somehow grasp and retain and then apply the information imparted to them.

Main Message: Remain aware of environmental and physical stressors the patient contends with at the time of the health communication or interaction. These stressors exist as a base upon which further stressors are added as the interaction proceeds.

Main Message: Acknowledge these pre-existing stressors and reduce or eliminate any of those in your control. For instance, always introduce yourself and state your role (think about how the flight crew always announces the flight number and destination BEFORE the plane gets off the ground), make eye contact, sit at or below the level of the patient, etc.

From Mikal:

And add to the stress of those situations a less than stellar understanding of basic English, and/or being deaf!

Main Message: Provide as many communication supports as needed - within a shame-free atmosphere.

From Martha:

My mom and her friends/colleagues all stressed the importance of using the medical terms that they will likely encounter - but compensating for that issue by surrounding those terms with very simple definitions and concepts. They also felt that the combination of strategies would help build confidence and competence - that they could "figure it out" without having to ask for help or feeling overwhelmed.

I heartily agree that incorporating medical terms is helpful. Relying on them is not. Acknowledge efforts patients make to learn and use them. But be careful to check out, from time to time, that you are talking about the same thing.
A friend's 86 year old grandmother had open heart surgery - she was very proud of the fact that she had learned some medical lingo, and that she had learned about the importance of diet and cutting back on fats. She told us: "I just had surgery to fix my CULINARY (instead of 'coronary') arteries".

From Aracely:

Also, the HLA has more than 11,000 health and non-health words that have been simplified, including major diseases, procedures, health insurance terms, medications and many more.

Main Message: Medical terminology is a foreign language for most of us. Introduce the most important terms and repeat them (along with their meaning) often and over time. As always, offer as much reinforcing media (written, visual, etc.) as possible.

From Lisa:

Essentially, we must get to the heart of the problems involved in message exchange, which I would argue exist in the relationship between provider(s) plural (not just the dr.) and patients/consumers as well as their loved ones. Building relationships (even for a 7 minute appt.) can make a huge difference in health outcomes and enactment of healthier behaviors. In other words, if I like and respect what the health care team communicates with me on a continual basis with little conflicting information, I perceive them to be more credible and thus, will be more apt to engage in the prescribed protocols.

Skilled communicators can accomplish an awful lot in a short time (per Lisa's note above). Establishing credibility is a skill and works both ways in health communication. It's a powerful tool. A positive and trusting relationship can serve to buffer against some of the stressors we've identified. Do not forget family members or others who are part of the interaction as well.

Main Message: The relationships among the participants in the communication interaction are powerful. Seek feedback about your communication skills. Tell patients directly that communication is vitally important for all parties.

From Julie:

But the doctor started out by saying what a great kid he is, and showed that he really saw him as a person, not just a medical condition. That alone helped me to focus on what he was saying, and that alone helped the communication because I felt we were on the same team.

What a great example of how just a few words can have a big impact. I had a similar experience with the pediatrician who cared for my 3 children - at the end of every visit, he made a point of saying something directly to me about the fact that I was doing a good job as a mother or some other such validating remark. It meant a lot to me, and made it easier to seek his assistance when things were not going well at all.

Similarly, a wonderful oncologist (cancer doctor) would reassure her patients and loved ones right at the start of the first visit - - something along the lines that she would be with them as long as needed and they were not alone in whatever journey was ahead. Great healing power!

Main Message: Create a sense of alliance - of teamwork - as often as you can.

I also like the simple terms "doctor" and "patient", but I worry that if I use "doctor" then I am excluding nurses, radiologists, nutritionists, and the many other non-physician professionals who communicate daily with patients. I do want them to be included in any discussions about communicating with patients.

Let's maintain some flexibility with terms, while respecting their impact and variable meanings.

Main Message: Interactions where health information is transferred takes place in all sorts of venues with all sorts of participants. Keep in mind how much information (accurate or not) is transmitted outside of provider-patient settings!

From NDavies:

These factors interact, and do not happen in isolation of the location or its inhabitants. They cannot be viewed as a list. They must be seen as factors on a matrix of dialogue.

The word 'matrix' is fantastic and conveys so much better what I've been trying to say! Thank you for introducing that word.

Main Message: Health communication occurs within a matrix of variables and factors.

******************************

I welcome your feedback. I think we've now reminded ourselves of the importance of the setting(s).

I'd like to suggest that we shift a bit and talk about another part of the matrix: EXPECTATIONS.
Perhaps consider the following terms (and more, of course): individual, social, money, power, healing, hope, rights, culture, privacy, etc.

When and how do expectations play a role in the dialogue? Is it important to establish mutually agreed-upon expectations, or is that 'optional'?

...just food for thought.....or a springboard for another direction....?

Anne

 

Thanks, Anne, for this synopsis of our discussion so far, and for highlighting the main points! I agree that we should keep a running list of actions that can help those of us on both sides of the communication table to be more effective at our efforts.

"Expectations" is another good part of the matrix to think about. Any thougths? I also like Lisa's concept of getting "to the heart of the problems involved in message exchange". Perhaps we could think about that at some point, too.

Thanks,

Julie

 

"Diseases that many people face today are chronic in nature such as diabetes, asthma etc. and people must be able to manage these themselves on a day-to-day basis. To do this successfully, the role of the patient must and is changing and so must the terminology."

Thanks, Nancy, for your thoughts.

I personally long for the day when new terms can be generated and incorporated into everyday use - it CAN happen.

At the top of my list of terms I'd like to see updated are:

  • health literacy
  • patient
  • provider
  • chronic (as in chronic disease or illness)
  • acute (as in acute disease or illness)

Anne

 

On the comment from Aracely: What does HLA stand for?

Mary

 

Mary,

Aracely referred to the Health Literacy Advisor (HLA) as "an interactive software tool, which includes 6 different electronic readability indices including the Fry based and a revised Flesh-Kincaid."

To find more about the tool go to: www.HealthLiteracyInnovations.com

Julie

 

"Health Literacy Advisor (HLA) an interactive software tool"

(see below for additional information from the original email)

.... In helping those in the field to create easy to read materials we created the Health Literacy Advisor (HLA) an interactive software tool, which includes 6 different electronic readability indices including the Fry based and a revised Flesh-Kincaid. This tool takes the issues mentioned before into account. For example, the HLA does not count bullets, headings, subheadings, abbreviations, phone numbers, websites, etc.

The good news is that the user will have a more accurate reading level score while saving time using the Fry based electronic tool. Also, the HLA has more than 11,000 health and non-health words that have been simplified, including major diseases, procedures, health insurance terms, medications and many more.

All we have to do now is to find a way to get it on the hands of all those producing health literacy materials and programs, specially the non-profits. In an ideal world, this tool along with a good training will help build organizations' capacity.

If any one has an idea please let me know. To find more about the tool go to: www.HealthLiteracyInnovations.com

Aracely Rosales,

President, Plain Language and Culture, Inc.

Chief Content Expert and Multilingual Director, Health Literacy Innova

 

Has anyone used this tool? It would be interesting to hear any feedback from someone who has!

Julie

 

Hi Lisa, I agree. Also, to examine the 'script' used to 'narrate' health care, the two doctor and patient terms imply a linear relationship. This also implies a power paradigm, with the doctor 'holding all the cards, and being the commander in the relationship' and the patient being the 'obey-er'. Provider and Consumer also implies a linear flow of service for cash. Remember, any words we come up with to 'replace' the current ones, have to work in the current model of health care, where there IS a bottom line and a cash dollar amount attached to procedures.

thoughts?

Nicola

Nicola Davies, BA

Health Literacy Specialist

Wellness Centre Coordinator

Media Services Publications Clerk

 

I have dealt with serious chronic illness and I also work in public health so I can see both sides. I think we need to consider what these terms mean to those receiving care. I offer my personal perspective.

I was a consumer of medical information when trying to find out what was wrong and what I could do about it. But I would not want my doctor or nurse to refer to me that way. I was their patient.
When I was in the hospital I certainly didn't want to be referred to as a consumer - I think this diminish me and the seriousness of my needs. I don't want to be client either - that sounds too impersonal for the relationship I have with someone treating my body. Patient connotes a caring relationship to me and that is what I want when I am sick. I am not abdicating my role or responsibility in my treatment but I don't want to feel alone in my illness.

Perhaps what we need is to empower patients by our treatment of them not change what we call them.

Kathleen Horton

Design & Marketing Coordinator

Vermont Department of Health

 

Hi Kathleen Horton,

I agree with your comments.

Rebecca Metternich

Central Illinois Adult Education Service Center

 

Hi Everyone,

This is a great discussion and I thank you all for asking such good questions and looking at so many sides of this issue! As we explore the health communication process, moving from setting to expectations, to the "heart of...message exchange", I want to invite more adult learners to share their thoughts with us. I also want to invite comments from people who are deaf, blind, developmentally disabled, or have other disabilities that affect clear communication.

Even as we emphasize that clear communication practices will benefit all of us, I think it is essential to hear from those people who have the greatest challenges to commmunicating (including orally, visually, through print, etc.) Some of our panelists who represent those with literacy challenges have had some scheduling issues, and I want to make sure you all realize that we welcome comments, stories and responses from anyone!

If you are a teacher, ask your students for feedback and share it with us.

If you work with a community of of people who speak primarily another language, ask them about communicating with their health team and let us know what they say.

If you work with a community of people with a certain kind of disability, ask for input from them and share it with us.

(We will also provide an opportunity to follow up on this discussion in later months.)

Thank you,

Julie

 

I'll follow-up on my own request for learner voices and include a
beautifully written piece by Archie Willard, which speaks to many of the
issues we have discussed, and offers suggestions. This is pasted below,
but can also be found in "Stories from Learners and Patients" on the ALE
Wiki:

http://wiki.literacytent.org/index.php/Health_Literacy

Julie

*********************

"I recently attended the Symposium," Health Literacy: The Foundation for
Patient Safety, Empowerment, and Quality Heath Care," put on by the
Joint Commission on Accreditation of Healthcare Organizations. The event
was held June 26 and 27.

I came away from the symposium with good feelings. I felt good because
two of us were former adult literacy students. We were invited to speak
as part of the program and our voices were heard! When we are seen and
heard this can brings a message of hope to others outside the health
field-the message that we are, and we should be, involved in our own
health care.

A lot of things were discussed and a lot of different things will happen
because of this symposium, but the thing that I took away from the
symposium was how important doctor and patient communication is. One of
the things that was encouraged was not to suppress patient questions,
but to create a climate to get the patient to express themselves.
Another thing that was encouraged is for patients to be open right at
first part of their visit. Not wait until the end of the office visit to
ask the most important question.

After attending the symposium when I got home I had a visit set up to
see a doctor. I was looking forward to this visit after being at the
symposium. I had never been seen by this doctor before. He appeared to
be a very pleasant and a nice person. He asked me some questions then
handed me a prescription and when I ask him a question he was out the
door before I got an answer. All the good things I had taken in at the
symposium now had disappeared in my mind and I realized we, as doctor
and patient, did not communication.

Where do we go from here? Two of the things we need are more patient to
be willing to advocate for themselves and more health care professions
to advocate for the better patient communication with their colleagues."

Archie Willard
Adult Learner
Health Literacy Advocate

I want to invite more adult learners to share their thoughts with us. I
also want to invite comments from people who are deaf, blind,
developmentally disabled, or have other disabilities that affect clear
communication.

 

HI All,

I've been consulting regarding health literacy with Special Olympics for a
while now. Ironically, I am learning how to do this while doing the
consulting! My experiences with literacy and communication come from
working with people who have Intellectual Disabilities (ID). I have posted
here before about the amazing amount of information available within the
research and teaching practices for people who use Assisitve Technology and
Augmentative Communication with regard to creating "clear communication."

I've not been able to keep up with this discussion too well, but have saved
all the posts so I can go back and read through them.

What i do want to share is the importance of teaching and practicing being
a good communication partner to both people who are in the role of educator
and those in the role of consumer. In the end, this is how one builds a
bridge to understanding. One technique I do not hear discussed much that is
hugely important in working iwth people with ID, is waiting. Some people
take up to a minute to process information and then create a reply in their
mind, let alone the time on an AAC device.

I would encourage you to spend a day cruising through the database of
articles on www.closingthegap.com to see some of the amazing tools available.

I also want to share that we're attempting a focus group discussion
regarding the understandability and usefulness of brochures created for
health promotion events with special Olympics. However, even this has a
huge gaping hole. The athletes recruited for the focus groups can *read.*
at some level. Truth be told, until NCLB came along, even though we knew
folks could learn to read, special educators were not held accountable to
progress in that area. So one year a student with ID may show interest and
skill with sight words/symbols and the next year the teacher may not build
on that skill or even maintain that skill. Thus, skills are lost. This has
been my own experience with my son. We worked more at literacy skills and
built consistency over time than the schools. It's hard.

Also, please consider the notion that "health literacy" may translate to
being able to take action on what you know. Thus, those who read symbols
(which are always paired with words), can be "literate" as well.

I hope to post a more thoughtful piece later, but wanted to get these
initial thoughts out there.

Take care,

Joan Medlen

 

I would like to briefly comment on a couple of the topics that have come up. My primary experience has been with the Deaf Community in the area of health education and health literacy. First, health literacy assumes English literacy for non-English users. It helped a great deal when I told an audience of Deaf people that most medical terms are from Latin. We break the long words apart. Cario=heart, pulmonary=breathing/lungs etc. This helps expand their knowledge "in context" of one topic. Second, "Teach Back" is not as effective or reliable when the physician/health professional is completely dependent on an interpreter. It is difficult to measure comprehension when all that is happening is the information is coming back through an interpreter. With American Sign Language this is particularly true. In 2002, Sinai Health System in Chicago interviewed (in ASL) 204 adults here are examples of the results: "Forty percent of respondents could not list any symptoms of a heart attack, while over 60% could not list any symptoms of a stroke. Less than half of respondents identified chest pain/pressure as a symptom of a heart attack. Only 61% reported that they would call 911 in response to cardiovascular disease symptoms." Some people's health literacy is so low, that nothing short of someone from the culture teaching in the native language can fill the gap. For Deaf people, that means more Community Health Workers (3 in the whole of the US is not much), ALL health information in ASL which means video. Finally, the issue of people learning more about how to advocate for themselves. Deaf people do not want to ask too many questions because if the physician comes back with another question, they will not be able to answer it. Without knowledge and access to information we cannot expect people to advocate...complain sometimes...but not advocate. With HIPPA and other "restrictions" health advocates and even chaplains are finding it difficult to visit and serve as support people. I recently was with a Deaf breast cancer survivor who is in her 3rd bout with cancer. She attended a conference we organized with oncologists etc. One topic the Deaf women wanted to learn about was lymphedema. Sitting there with her arm and hand swollen she asked, "Do you think that is what I have?" How could she have cancer for the 3rd time and no one has explained to her what that is. Currently we are making a documentary about Deaf Breast Cancer Survivors and interviewing these women. Their stories are eye openers into all the questions posed about the environment. I think the lessons and learnings with this population are transferrable to many.

Nancy Meyers, MS

Consultant to the Deaf Community

Founder of the Deaf Hospice Education & Volunteer Project

 

Thank you, Nancy, for sharing with us this eye-opening information about health literacy issues for the Deaf community. It certainly seems like more efforts need to be initiated in this area. I have many questions, but for now I want to stick to those that relate to communication between the patient and the health team.

How effective is it with Deaf patients to pair pictures with the information that is being translated? It has been shown in hearing patients that the use of pictures can improve compehension and especially recall of the information.
(See: http://healthliteracy.worlded.org/doaks_houts_article.pdf )

This is a question that I want to bring up for everyone now. We have not yet talked about the use of pictures while communicating, yet they have been found to be enormously effective not just in take-home materials, but during a clinical encounter as well. How many of you (whether as a patient or health professional) have experienced using pictures during a visit while communicating? How well has it worked for you? Why don't we do it more often?

I would love to hear some responses to these questions!

Thanks all,

Julie

 

Hi Everyone,

Here is a link to an excellent article that relates to our discussion. It is about communication strategies for English language learners and adults with learning disabilities, but describes strategies that would be helpful for so many patients.

(Just substitute "patient" for "student", and "exam room" for "classroom"!) What do you all think of these strategies?

Communication Strategies for All Classrooms: Focusing on English Language Learners and Students with Learning Disabilities

By: Dale S. Brown and Karen Ford
http://www.ldonline.org/article/19260

Thanks to Rochelle Kenyon, moderator of the Learning Disabilities List for finding this!

All the best,

Julie

 

How many of you (whether as a patient or health professional) have
experienced using pictures during a visit while communicating? How well
has it worked for you? Why don't we do it more often?

When I am working with people with intellectual disabilities, I use
pictures and visual cues all the time. I am not a "clinician," trying to
teach about a disease, but rather a dietitian, teaching abou thealthy
habits. An example of a method for teaching how to recognize food groups in
a combination food, go here:
http://downsyndromenutrition.com/products/files/DSNH_Activty_Sample.pdf

This was written in 2001, and needs to be redone.

What I find is that any time I use pictures, people understand more. What
is important, however, is that the pictures truly augment the message
rather than make the piece "look pretty." Also important is that the use of
pictures means using *quality* pictures. Not fuzzy images printed poorly
from a website. It takes more time and effort to pull together a visual
message that is understandable.

On a more personal note and anecdote, when my Mother was diagnosed with
Ovarian Cancer this summer, the use of a visual was very important in
helping her understand my questions to her oncologist. My parents are
literate, well-educated people. However, they have a very difficult time
with health/medical concepts. When the doctor said she had nodules on her
messentary (network of veins and arteries near her liver), I really wanted
to know the risk involved. So as I asked the question, I pointed to the
area of concern and showed hoe close it was to the liver on a visual he had
on the wall of a woman's organs. If I had not done that, I'm not sure my
Mother would have chosen to do chemo before surgery, which turned out to be
a wise move because all the nodules were killed before her surgery, thus
protecting her liver.

When we returned home, both my parents thanked me for helping them
understand the risk to her liver - the doctor really didn't verbally
emphasize it for them in a way they could understand, even though *I*
picked up on the nuances of his statements. We have the same issue with
his illustrations about her condition - and his expectation of what life
will be like in the next few years. It has been an eye-popping experience
to watch a very articulate oncologist talk with my very intelligent
parents. I think they are connecting until I hear the questions after we
get home.

This has made me very thankful for these discussions - outside of my
passion for making health information undrestandable for people with ID.

Take care,

Joan Medlen

Joan E Guthrie Medlen, R.D., L.D.

Clinical Advisor, Health Literacy & Communications

Special Olympics Health Promotion

 

What a great idea. This would be very useful in entry level ESL classes, and it could also be used in the elementary grades and/or preschool to teach those concepts. I've saved it and will forward it to my colleagues who teach beginning ESL. And will also use it in my health care bridge class for ESL students with goals in the health care field. I'll also share it with the nursing instructors so they can incorporate it into their patient/healthcare provider lessons.

Many people are in the same boat as your mother, not tuned into the nuances of medical talk. Add to that, the mental state of those who have been diagnosed with something as frightening as cancer, both the patient and those close to them, and you have a freeway of mis/lackof understanding...or, just not hearing what's being said because their minds are going miles an hour thinking about other things. I've been there, done that in the past myself as patient. Fortunately, my oncologist was a very personable and perceptive man, and took the time to make sure I understood everything. The fact that I'm here, twenty years later, can be attributed, in part, to his patien, caring way of practicing medicine! He recognized the fact that being objective and listening to what's being said is tough when your life is at stake! Pictures can be worth a thousand words!

Thanks for sharing.

Mikal Steinbacher

Instructor, ABE/ESL/English

Lake Washington Technical College

 

Thanks, Joan, for sharing both your story and your nutrition lesson. The lesson is an excellent example of using pictures in a teaching activity and would be very useful for adult literacy or ESOL classes as well.

And the story about your mother also illustrates how nicely a story can convey a message!

Julie

 

When working as a clinician doctor (Latin root = teacher), I "teach" all
day long. (In my world, teach=helping someone understand something.)

I hand-draw pictures most of the time, and I use file pictures once in a
while. The common phrase is "a picture is worth a thousand words"; in the
medical world, a picture is worth a million words. Teachers sometimes talk
about people either as visual learners, auditory learners or kinesthetic
learners. Pictures are ESSENTIAL/MANDATORY for visual learners. Through
practice I can now recognize easily when I am having a conversation with a
"visual learner"; I immediately start drawing pictures, then talk from the
pictures--adding labels as I talk. Finally, the act of creating the
picture on the spot carries the symbol of personal care (this is not an
off-the-rack picture that everyone receives, this is MY picture). The
picture then goes home with the individual to help them share what they
learned with other family members.

Kinesthetic learners need models they can touch and/or manipulate.
Auditory learners do not need pictures and/or models, but their learning
is deeper and broader with pictures and/or models. Individuals with
auditory disabilities MUST have pictures and/or models.

There are several reasons why these strategies are not used more often.
The most commonly cited reason is the time it takes to help someone truly
understand something; time is money in the modern world and reimbursement
for healthcare education is not reimbursed well if at all in most
healthcare scenarios. Perhaps an even more common but unacknowledged
reason is that most clinicians have little if any training in teaching and
LEARNING. If the clinician knows nothing about learning, s/he cannot
possibly appreciate the value of pictures in medical/health education.
Both of these root causes are remediable---but only with the development
of the political will to make it happen.

Howard J Zeitz, MD

Co-Chair, Rockford Regional Partnership for Health Literacy (RRPHL)

Medical Director, Asthma and Allergy Services

University of Illinois College of Medicine-Rockford

 

I cannot agree more regarding the importance of using illustrations.
Our agency provides community education to farm workers, recent
immigrants and other "rural" populations. We have developed pictorial
flip charts on HIV prevention, Heat Stress prevention and Domestic
Violence. In addition we have developed a 100% pictorial PowerPoint
presentation on domestic violence. We have found that literate as well
as low literate populations appreciate the simplicity and clarity of our
messages. All our community education is conducted in an interactive
manner coupled with small prizes/incentives to inspire participation.

Joan Cuadra

Project Coordinator

Proteus, Inc.

 

Wow! Can you share those documents? They would be great in health care classes as examples of how to better communicate with patients! And domestic violence is present at all levels. It is very important that we get the message across that it is illegal in the US, and that something can and will be done to stop it. I've also added the website to the list of sites I provide my ESL students in every class I teach. The rest of the sites on my list are related to learning and practicing English, but this one is too important to these students to not include it too.

Mikal Steinbacher

Instructor, ABE/ESL/English

Lake Washington Technical College

 

Howard,

Thanks for bringing up the issue of different learning styles, such as visual, auditory, and kinesthetic. This is something that teachers are often aware of, but the medical community may not be. (This is one reason why collaborations between adult literacy programs and health programs can be so helpful to everyone involved!)

I would love to know how you became aware of this phenomenon, and how you learned to recognize when you are talking with a visual learner? What cues do you look for?

I love that you draw pictures during an explanation, and agree that this act is a "symbol of personal care", AND will help the patient to retain the information better. But for those clinicians who are not comfortable doing that, how else could they access visuals quickly to help with an explanation?

Such as...

  • lots of posters on wall
  • collection of good brochures/fact sheets with pictures to point to
  • index card file with variety of pictures you could refer to
  • other ideas?

Thanks again for a great example of clear communication!

Julie

 

In the past few years, I've had the opportunity to work in a health resource 'center' that was open to everyone. We had a vast collection of books for loan (free) in our library. Videos as well. But what set us apart is that we expanded the types of media (most acquired at low, or no cost) to include:

  • coloring books
  • posters
  • bookmarks
  • wallet cards
  • magnets
  • games
  • quizzes
  • materials for demonstrations
  • magazines
  • book covers
  • audio cassettes, CDs or podcasts
  • speakers kits

Also online are vast numbers of PSAs (Public Service Announcements) both video and audio formats that speak to a host of issues. One of my favorites is http://www.coughsafe.com/media.html. While this particular piece probably appeals only to a limited demographic, I suggest looking at it because it's an example of a no-cost resource using a rather different style.

I have 2 other quick points regarding the use of pictures - points made by others in the field, but I would like to mention them again:

  1. When using pictures/illustrations, make sure to turn (or 'orient') the drawing so that it makes the most sense for the viewer. For instance, a couple of times, I've actually placed a 'picture' of organs in the abdomen, for example, right onto the person's belly. They've looked down at it and then understood better where (inside THEIR body) the organ was. It's often tough to 'translate' up and down, left and right, etc. when looking at a picture. Another suggestion is to sit beside the person you're drawing the picture for - - that is, unless you're exceptional and can draw something upside down while you're facing the person.
  2. Be especially sensitive about whether or not it's appropriate to use pictures/illustrations that show only parts of the human body. There are many people who have had experience with violence (especially, but not limited to, war and torture) for whom seeing parts of a body may be particularly traumatic.

Anne

 

Just a quick response. While red flags or cues are good, I generally
find that everyone appreciates a picture along with an oral explanation.
When I draw them I put it on the back of the paper that our patients are
going to be taking home anyway so that they have it at hand to look at
later.

Barbara Bayldon, MD

Children's Memorial

 

Dear list-surv friends,

One further health education enhancement that does not add to cost is: Write the patient's first name (or initials) on the sketch or pamphlet you give her/him. (except maybe for AIDS)

This makes it personal and important to the patient. Why waste that opportunity?

At a Philadelphia hospital where this is practiced, patients - on their next visit - began bringing the pamphlet back with their questions. And, they quit throwing the pamphlets away in the parking lot.

For newly developed pamphlets/instructions, you can add:
Name:_________________
on the cover. It costs nothing, but means a lot.

best wishes,

Ceci and Len Doak

 

One reason I think that clinicians don't draw is that they think they can't.
To get beyond this hurdle, in some of my workshops I review how to draw
stick figures, including proper body proportions. With little practice and
lots of humor, most participants are soon able to draw recognizable figures.

For those who can't or don't want to draw pictures (especially of internal
body parts), I suggest using tear sheets with pictures already drawn on
them. For instance, when explaining heart procedure the clinician only needs
to highlight, draw, circle, or otherwise mark where the problems are and
what was done.

Whether drawing "from scratch" or adding to a pre-drawn picture, it is
important to supplement it with simply written text. And then give the
picture to the patient, of course!

~Helen

Helen Osborne, M.Ed., OTR/L

Health Literacy Consulting & Health Literacy Month

 

Good point, Helen!

Nicola

 

Helen,

Do you know where to get these tear sheets with pre-drawn pictures? What a great idea!

Also, just to reinforce a point that Anne made, another nice thing about using pictures is that they encourage the subtle yet effective habit of sitting next to each other when communicating!

Julie

 

Julie asked where to buy already-drawn tear sheets. Here are some companies
that quickly come to mind (and likely there are many more):

Pritchett & Hull, http://www.p-h.com

Krames, http://www.krames.com

Anatomical Chart Company, http://www.anatomical.com

~Helen

 

Julie: I have come to understand visual, auditory and kinesthetic learning
as a result of: a)professional development for medical school faculty
(teacher training workshops); and b)collaborations with K-12 teachers and
administrators.

Technically, we are not talking about learning styles; we are talking
about "portals of entry". Information enters the brain through 3 portals
of entry (eyes/vision, ears/hearing, hands/feet/touch/movement=kinesthetic
actions). Once information enters a portal (for example, the eyes), it
travels along one or more pathways to one or more regions of the brain
where it is processed. If the eye, the pathway and the brain region are
all normal, the result will be understanding. So called "visual learners"
generally use this learning strategy preferentially for any number of
reasons. However, the best results occur if the learner can acquire
information on the topic at hand through all 3 portals. So if I talk about
asthma, the person with asthma listens and asks me questions, I answer
those questions with words AND pictures I draw, AND the person takes notes
(kinesthetic movement), the new information is entering all 3 portals
(sight, hearing and touch) and will be processed in multiple brain
compartments. If I give a mini-lecture without pictures, discussion and
note taking, very little learning will occur.

During discussion/conversation, the best way to recognize "visual
learners" is to observe their facial expressions. Perhaps the 3 most
common are: blank look, facial question mark and deer-in-the-headlights.
A second way to recognize visual learners is through their verbal
responses: I'm not sure I understand; could you repeat that; and the
ever-popular "dead silence". The final way is by asking them to
"teach-back" the information; after discussion without visual input, an
auditory or kinesthetic learner usually can complete the teach-back but a
visual learner cannot.

As to your last question re quick access to visuals, I have little to add.
Perhaps other participants in this discussion can answer. When I have
searched for usable/helpful visuals, I generally have found visuals that
are as complicated as the usual Grade 12-16 written documents that pretend
to teach health related topics. I would be happy to learn more about
reliable sources of usable/productive/helpful visuals.

Howard

 

I just want to remind everyone that this discussion will not end today, but continue officially through Monday the 22nd. I will continue to check for messages over the weekend for those who will have time to read and respond. Of course, as always, we can continue as long as we want, but the panelists plan to be available through Monday.

Today's discussion has been interesting, practical and informative! Howard's information below really gave me a new way to understand communication and learning.

To think about in the next couple days:

How can we encourage patients to be open and forthright about how they prefer to get information? ("Dr., I will understand this much better if you can show me a picture...")

How can ABE and ESOL teachers use their unique environment to encourage this kind of self-advocacy and help improve communication skills for learners?

How do we create a "shame-free" environment for people with lower literacy skills?

Thank you all for your contributions!

Julie

 

This is a great discussion!

Like Howard, I draw pictures as I explain things. I think drawing may be easier in my specialty (Gynecology) because I need to explain concrete things rather than abstract concepts. The most effective way to explain something differs from learner to learner, but also depends on what you are teaching. The best way to explain how to take birth control pills is probably not the best way to explain the impact of diabetes on pregnancy.

I generally preface any discussion with a patient by saying, "I explain things better when I draw, but bear with me because I am a terrible artist". I think if patients know that I do better when I draw, they are more comfortable asking for what they need.

I use models less often, but often hold my drawings (such as they are) against the relevant part of my body so the patient gets a big picture view.

I find it takes me just as long to explain someone else's drawing as it does to draw my own, so I don't use tear sheets. For other people pre-drawn tear sheets might be more effective. I would make a plea though, that we don't use drawings provided by pharmaceutical companies - these are nothing more than mini-billboards for their products. Patients who are struggling to understand their health don't need to be dealing with advertising at the same time!

Just like school teachers, those of us in health care need to remember to offer a variety of ways of learning - talking, reading, drawing, models --what ever it takes to get the information across.

Lisa

Lisa M. Jones, MD

 

HI folks. This topic has raised not only questions, but great input and
change agent ideas. Kudos. When conducting field research on the factors
that hinder or enhance collaboration between literacy and health educators,
one health promotion director exhorted the literacy teachers in the room to
encourage learners to take a tape recorder into every medical interview.

Often, emotions and learning modalities (as Dr. Zeitz has discussed in the
last exchange) are working full-time to make the most of the limited face
time with a medical professional these days. So, comprehension is limited,
and that affects the "compliance" factor. She said that research shows that
clinicians actually judge those patients who tape interviews as more engaged
and positive. Learners then can take the tape (or these days, Ipod or MP3
player!) back to their families and to their literacy program for more
careful analysis, discussion, planning and enlist what Thomas Sticht has
called a "group mind". Much like what some of us do when trying to load a
new computer program, or program a VCR--we turn to the younger generation or
our children.

Is a low health literacy score for an individual really an indicator of
their ability to navigate various settings or health information? Perhaps
not, since the impact of their support team also plays a factor. Bill Putnam
talks about the impact of isolation in his book "Bowling alone: The future
of communities" as outweighing many other social determinants. So, whatever
we can do in our various settings to link people to support systems is
crucial to improving their health.

Another resource is the Literacy Audit Kit, sold by Literacy Alberta (see
http://www.literacyalberta.ca/resource/auditkit/audktpg1.htm). The series of
checklists and accompanying video depict ways to adjust intake and client
interaction in various social services settings to make them more welcoming
to all, and especially to encourage adults with low literacy to feel more
comfortable about asking questions.

The Askme3 campaign, which encourages ALL of us to be more assertive abuot
asking questions is the ultimate solution. Instead of relying on health
professionals or literacy folks to intervene after the fact, it is more
efficient to encourage patients themselves feel more comfortable speaking
up. Of course, iin some cultures, open dialogue is just not a common trait
for authoritarian situations like a medical interview. So, the Ask Me 3
campaign sets the stage for expecting dialogue. That's why we devleoped the
Patient Prompt Card in our coalition, to encourage all adults to own their
own information and practice asking questions. The Going to the Doctor
booklet and facilitator's guide is available through Literacy Partners of
Manitoba at http://www.plainlanguage.mb.literacy.ca/resource.htm or
204-947-5757 or a northern learner's original edition through Yukon Learn

http://www.yukonlearn.com/publications/index.php.

Hope this helps!

Marg Rose, M.Ad.Ed

Health Literacy Consulting Group

 

Thanks, Marg, for these resources! I like this emphasis on the support network. That's where I think adult education programs can really have an impact. If learners can use the safe and supportive environment of their classroom to practice the kind of dialog, questioning and vocabulary they will need for effective communication in the more intimidating environment of the health system, then they can gain confidence and make real progress.

Here's a link to a chapter in "Family Health and Literacy" about collaborating between literacy and health programs:

http://healthliteracy.worlded.org/docs/family/started.html#collaborating

I'd love to hear from some other teachers who have addressed health in the classroom, or from health educators who have been a guest in an ABE classroom!

Julie

 

Just adding my thoughts to the discussion...

Ask Me3 is a great resource. It's simple, and helps the patient focus on his/her main problem and enter into a discussion with the doctor as to what needs to be done. For a more robust resource, take a look at the Agency for Healthcare Research and Quality's "Questions are the Answer" campaign: http://www.ahrq.gov/questionsaretheanswer/index.html . There are posters, ads, brochures you can print, and an interactive website that helps patients build a list of questions to bring to their next appointment. (NOTE: For those of you following the "doctor vs. provider" discussion last week, AHRQ uses the term "clinician"). Medline Plus offers a collection of patient resources on"Talking With Your Doctor " at http://www.nlm.nih.gov/medlineplus/talkingwithyourdoctor.html

.

I haven't asked any of our physicians how they feel about patients bringing a tape recorder into the exam room. I would think most would not have a problem. Some pharmacies use digital voice recorders so patients can listen to instructions anytime they need to at home. We recently added a secure messaging system for our care management programs, and hope to expand it so all patients can use the service. Providers can leave recorded messages for patients, including lab results, that can only be accessed by the patient using a unique medical identification number and password/PIN. When a patient "picks up" the message, they have the option to delete it, play it again, or save it. This system could work for any type of information, including instructions for taking medications. Bringing a tape recorder into the exam room would not be any different and would probably save the provider and patient time.

Doug Seubert

Guideline Editor

Quality Improvement & Care Management

Marshfield Clinic

 

The StandOut text series I use at both colleges I teach ESL has a unit on health. I augment the information in the text by sharing additional information from other resourses. I also invite the RN who has a clinic at one of the collleges to come to my classes and share her knowledge of how to prepare to go to the doctor, how important it is to have a doctor before you really need one, and she shares a list of low cost/free medical and dental programs in the area. My students are always grateful for the information she imparts!

I also arrange to have CPR taught to my students. The certification they get for the CPR training enhances their positions at work, and makes them more confident in themselves.

Mikal Steinbacher

Instructor, ABE/ESL/English

Lake Washington Technical College

 

Our literacy program and our community college are linked through our ABE classes. The literacy program has received a health literacy grant for the past 3 years to provide health literacy curriculum for the ABE classrooms and family literacy classes offered by the college.

We offer 3 in-class and 3 open workshops each year. We sponsor a health literacy fair at the end of the year. We have also developed (grant-funded) a health literacy teaching file that is at each location of the program. Teachers and tutors can come and get information about over 40 topics with lesson plans, materials and activities all at an easy reader level (3.0 - 6.O gle).

We send the teachers in the program a preparatory packet that includes materials to begin familiarizing their students with the workshop topic, then post workshop materials to provide assessment and feedback. The teachers have been very receptive and the students love it. Some of our topics have included: Women's Health, Healthy Hearts, , Business of Health, Stress Management & Mental Illness, Dental Care, First Aid and Emergencies, Fitness & Nutrition, Family Nutrition, Diabetes & High Blood Pressure and we are currently working on a Men's Health workshop.

We have had much success with this and the anecdotal evidence supports more confident, assertive students who now go to the doctor with their AskMe3 questions and a bag with all of their prescriptions, who eat more regularly and make healthier choices in what they eat and students who found out they were diabetic by being tested at our health fair.

It is worth the work, thanks for the opportunity to share!

Thanks,

Mary Lynn Carver

ABE/GED Instructor

College of Lake County

 

I think Mary-Lynn has hit on a very important topic.

Relevance to a student's life is an important motivator for learning. Using something so obviously relevant to an individual (what is more relevant than our health) can create interest for students.

Rather than looking at literacy as a route to health information, maybe we could envision a two way street. Literacy is a route to health education, but health education is also a route to literacy.

Just a thought,

Lisa

Lisa M. Jones MD

 

Lisa,

Your observation is correct, and backed up by research! Adult literacy learners are motivated by high-interest subjects including health and have shown increased motivation to work on skills such as reading, writing, critical thinking and speaking. See the following reference:

Kurtz-Rossi S, Coyne C, and Titzle J. (2004). Using research to inform health aand literacy program development: Results from the HEAL:BCC evaluation study. Literacy Harvest. 11, 35-39.

And Andrew, thank you for your observation, and thanks to the community here for coming together to make this forum so valuable!

All the best,

Julie

 

Sounds great! Is there anyway for us folks who don't live anywhere near IL. to get access to the material?

Mikal Steinbacher

Instructor, ABE/ESL/English

Lake Washington Technical College

 

I'm checking into it. The cost to copy & send our entire library would be prohibitive for our program. Much of the material is hardcopy, not electronic, so I will get back to those interested via off-list email when I know what the grant manager decides. Thanks for your patience!

Thanks,

Mary Lynn Carver

 

Everyone,

I want to thank you all for a great discussion about health communication! We had many specific, practical suggestions, examples of creative projects and collaborations, and a constructive debate about terminology. I especially want to thank our panelists for sharing their viewpoints, experience and ideas with us. I feel that many of us have come away with a greater understanding of the components of clear communication, and some ideas to put them into practice.

I thank everyone who contributed and hope that we continue to share our ideas on this. We have said many times that health literacy is broader than this communication piece, but it is still a big part of what we can improve, and could have a big impact on people's health if we do!

Thanks again,

Julie

 

Does anyone have experience implementing a health literacy program within a
free medical clinic?

We have started off with the AskMe3 program and will getting the AMA Health
Literacy kit to do training with volunteers, staff and medical providers.

Another questions is, where does one go to get further training in Health
Literacy?

Thanks

Ed Hammitt RN

Board of Directors, Ashe County Free Medical Clinic

 

The Venice Family Clinic, the largest free clinic in the nation, has been working on a large health literacy project since 2003.

You can contact Marcela Tetta, Director of Health Education, Promotion and Community Outreach for more info. Her e-mail is mtetta at mednet.ucla.edu.

Julia Causey

 

Edward,

I am in the process of pilot testing a primary care health literacy program I developed specifically for community health centers. So far no final data, just a lot of excitement among the health care team and among the patients!

There are a couple of options for provider training. In New England the Harvard Pilgrim Foundation does training in Cultural Competency (which includes health literacy). For OB-Gyn's, the What to Expect Foundation is rolling out some very exciting training programs for clinicians. (stay tuned for that!) The Joint Commission sponsored a conference last year and I believe some training materials came out of that.

There are also independent individuals doing training for healthcare staff. I have done some medical grand rounds and nursing trainings on health literacy. My experience is that training is often a "a-ha" moment for staff - and a little bit of training goes a long way. Grand rounds are a great option if you can get to them. Most hospitals are ALWAYS looking for speakers and docs of a lot of different specialties attend.

Helen Osbourne is also a wonderful speaker. I'm sure you could contact her directly for more info or feel free to contact me off-list and I can help you find some resources.

Hope that helps!

Lisa

Lisa M. Jones, MD

 

In our pediatric medical and dental clinic, we include an education
component in each visit with the family/parent caregiver. We give out
copies of our book, "What To Do When Your Child Gets Sick," in English
or Spanish as appropriate. This book is written between a 3rd and 5th
grade reading level.

We educate our staff on health literacy issues and ask them to watch for
cues that parents bringing in their children have trouble reading, such
as taking a long time with forms or leaving many areas blank.

For further training in health literacy, the Institute for Healthcare
Advancement puts on an annual health literacy conference for providers
in early May in southern California. Visit the website,
www.iha4health.org for information on the 2008 conference.

-- Michael Villaire, MSLM

Director, Programs & Operations

Institute for Healthcare Advancement

 

Hi Ed,

HRSA is going to launch ( November 7) a web-based interactive training
course is designed to address the needs of the populations that HRSA
serves. Course will be available online nationally and internationally
to Public Health Professionals and other interested in the topic.

We will be doing a demo of this course at the APHA HRSA Exhibit booth.

Linda

Linda Johnston Lloyd,

HRSA Health Literacy Coordinator ~HRSA Center for Quality

 

There is a really good resource entitled Plain Language Clear and Simple from the Government of Canada. It is from 1994 but the information is pretty good, at the very least as a starting point. The department WAS called Multiculturalism and Citizenship Canada, but I believe this name has changed. The ISBN# is 0-662-222420-5 if you have access to some good library databases.

Anyway, here is the list of resources from that document:

For More Information

Plain Language- General

Bailey, Edward, P. Jr. Writing Clearly; A Contemporary
Approach.
Columbus: Charles E. Merrill Publishing Company,
1984.

Baldwin, Ruth. Clear Writing and Literacy. Prepared for the
Ontario Literacy Coalition.
Toronto:1990.

Bates, Jefferson D. Writing with Precision: How to Write so that
You Cannot Possibly be Misunderstood: Zero base
Gobbledygook.
Washington: Acropolis Books, 1980.

Birchfield, Martha J. The Plain Language Movement: Away from
Legalese and Federalese: A Bibliography.
Monticello, Illinois:
Vance Bibliographies, 1986.

Canadian Bar Association and the Canadian Bakers'
Association. The Decline and Fall of Gobbledygook: Report on
Plan Language Documentation.
Toronto:1990.

Collins, C. Edward and Hugh Read. Plain English: A Guide to
Standard Usage and Clear Writing.
Scarborough: Prentice-Hall,
1989.

Culls, Martin and Chrissie Maher. Gobbledygook. London,
England: George Allen & Unwin, 1984.

Culls, Martin and Chrissie Maher. The Plain English Story.

Stockport, England: Plain English Campaign, 1986.

Dorney, Jacqueline M. The Plain English Movement. ERIC
Clearinghouse on Reading and Communication Skills.

Washington: Office of Education Research and Improvement
(ERIC), 1987.

Dowis Richard. How to Make Your Writing Reader-Friendly.
White, Hall, Virginia: Betterway Publications, 1990.

Eagleson, Robert D. The Case for Plain Language. Toronto: Plain
Language Center, Canadian Legal Information Center, 1989.

Einstein, Charles. How to Communicate: The Manning, Selvage
and Lee Guide to Clear Writing and Speech.
New York:
McGraw-Hill, 1985.

Flesch, Rudolf. How to Write Plain English: A Book for Lawyers
and Consumers.
New York: Harper & Row, Publishers, 1979.

Cowers, Sir Ernest. The Complete Plain Words. Harmondsworth:
1987.

Gray, Lee L. Journal of Studies in Technical Careers. V.9, no1,
Pp 17-19, Wisconsin, 1987.

Health and Welfare Canada, Seniors Secretariat. Communicating
in Print With/About Seniors. Ottawa: Supply and Services
Canada, 1991

Lutz, William. Doublespeak: From "Revenue Enhancement" to
"Terminal Living"-How Government
, Business, Advertisers, and
Others Use Language to Deceive You. New York: Harper& Row,
1989.

Nore, Gordon W.E. Clear Lines. Toronto: Frontier College, 1991.

Redish, Janice C. The Language of Bureaucracy. Paper
Presented at the Conference on Literacy in the 1980's, Ann Arbor,
Michigan, June 24-27, 1981. Washington: American Institute for
Research in the Behavioral Sciences, 1981.

Saskatchewan Consumer and Commercial Affairs, Plain
Language for the Saskatchewan Government-Policy and
Guidelines.
1991.

Steinberg, Erwin Ray (ed.). Plain Language: Principles and
Practice.
Detroit: Wayne State University Press, 1991.

Vernon, Tom. Gobbledegook. London: National Consumer
Council Pamphlet Series, no.756,1980.

Nicola Davies

 

The Literacy Assistance Center can help you. We have been working very
closely with public and private hospitals and clinics and have provided
hundreds of hours of training to health educators at the NYC Department
of Health. We offer a wide variety of trainings regularly and I am sure
we have something that will meet your needs. Please contact Winston
Lawrence at winstonl@lacnyc.org for more info.

Elyse

Elyse Barbell Rudolph

Executive Director


Literacy Assistance Center




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