[AAACE-NLA] Iowa Health and Literacy Conference (a little long)

[Nancy Hansen]

Hi All, but especially "Hi Archie",
 
Thanks for sharing your impressions of the New Reader-hosted event that opened up the eyes of many professionals in the Midwest regarding literate patients who understand their healthcare -- instead of the <old> moniker of "non-compliant" patients.
 
Just as Archie has said here, it was a great conference.  The next step is <ours> of the community, NLA subscribers.  We need to facilitate, with learner leadership's help, further discussion and implementation of improved communication with healthcare providers, for the benefit of all.  Read carefully Archie's points below and you will understand exactly why.
 
A bit of follow-up for me here.  I am just a director of just a small CBO in a medium-sized city with a couple of <huge> healthcare facilities.  Archie, I conducted a personal experiment two days after my return from Des Moines.  
 
I had to get a prescription filled.  So instead of dashing into my pharmacy drive-up window after work, I decided to go over to my chain drugstore before I got ready for work on Monday morning.  I was still in my casual knock-around clothes.  I wanted to see what would happen if I did like the learners were doing with the pharmacists at the conference.  
 
I carried in my small bag of 3 pill bottles and asked him to tell me whether or not any of them should be taken seperately from each other -- along with the new one he still had in his hand.  What would my reaction to them possibly be if I *did* take them together first thing in the morning.  
 
Without pulling anything up on the computer, he said they would be fine to take together.  (When I knew for a fact that 2 of them said I had to take them two hours before eating.)  He never reviewed the directions on the bottles nor the *new* bottle in the bag.  I eventually told him who I was (besides being his patient).  
 
I told him that I was the director of the literacy program in the city and I work with adults to teach them to read.  I said, "They cannot *read* these labels or this explanation sheet attached to a new Rx.  I am concerned about them receiving appropriate instructions when they are taking their medications."
 
He acted non-plus'ed -- I didn't get a reaction out of him.  The *tech's* reaction, however, was her mouth dropped open - she never said another word - she was dumbstruck!  His advice was, "Well, you *tell* them to ask a lot of questions!"  But he missed the point!  I *did* just *that* and didn't get the right answers!!!
 
We have our work cut out for us.  I am far more brave than any of the adults in this program would be, faced by a professional in a tie and blue shirt under an official-looking white medical coat.  
 
The encouraging part for me?  Today I called the hospital personnel who is creating a heatlth education symposium in Sioux Falls in November.  I made that call to offer to forward Archie's email below to her that you NLA subscribers have read.  Archie is coming to Sioux Falls to present a learner's view of healthcare.
 
I told her this same story.  She had more than a "mouth drop open" reaction.  She said, "But you *did* ask all the right questions!  Wasn't he apologetic at least?"  She also added that we have our work to do!  
 
The wheels are turning, Archie.  I will be at the symposium with an information table and be presenting to some 50 to 60 of their hospital training/education department before the symposium occurs in November.  She wants to get started.  And started *now*.
 
What's that expression?  Turn over a pebble and a shifting of sand occurs?  I thank you for the hard work you put into the conference and for the willing participation of the learners of the region to discuss a very important social issue for the benefit of all who come after them into the clinics, pharmacies, doctor's offices and hospitals of our land.
 
Nancy Hansen
Sioux Falls Area Literacy Council
Sioux Falls, SD
sfallsliteracy at yahoo.com


Archie Willard <millard at goldfieldaccess.net> wrote:
The New Readers of Iowa’s “Health and Literacy Working Together” Conference is over. I don’t think there has ever been a state new readers conference like this one before. This health and literacy conference could be held up as a model to be used by other states. In the past someone with higher education has spoken for the adult learners. They have talked with us, asked us questions, and have written reports about us.  They have gone to Congress and other groups to give their opinions on what they think it’s like for those of us with reading problems. At this conference the adult learners spoke for themselves, and people listened to and learned about our point of view of health care. In Iowa after fifteen consecutive years of adult learner conferences, we have developed leadership and we have a group of good adult leaders within our state who will speak out.   

People from ten different states attended this conference.  That makes the voice of this conference a lot stronger. People with literacy problems, educators, people from the medical field and others were there. If anyone takes a good look at what happened at this conference, it could be the spark that makes things come about to build better communications in health care.

There was a panel of health professionals from the Iowa Health System with each person speaking from his/her own perspective. The message from all of them to us was to not give up on ourselves and for us, the adult learners, to tell the people in the medical field about our reading problems.  They will then understand and help us. They encouraged us to ask more questions and to take more responsibility for our own health care. They also told us about how they have to struggle to provide good health care when they aren’t made aware of our poor literacy skills. We all left the conference with a better understanding of each other.   

The adult learners looked at forms that the Iowa Health System uses. We told them about the things we didn’t understand about the forms as well as pointing out the good things. The feedback about our work that I have received from the Iowa Health System has been very positive.

At the end of the first day people were able to talk about their medications with one of a group of pharmacists provided by Drake University School of Pharmacy. Being able to do this was a big hit with the adult learners.  Some of them said they had been taking their medications wrong and were very pleased to receive this new information. 

The most important thing the adult learners did was to make some comments and a statement concerning how we feel about health literacy. This statement will always be out there for people to see and it belongs to the adult learners who were at the Iowa Conference.  You can read this statement a little further below. 
 
A lot of good things happened at this conference – in fact there were too many to mention all of them.  You just had to be there to take them all in. A lot of good people and organizations came to help and even some people who came on their own were there to help make this conference a success.  I don’t know how to start to say thanks, but I do want to say, Thank you so much!!” to you all.

The Institute of Medicine (IOM) in their Health Literacy Executive Summary, “A Prescription to End Confusion,” reports problems in health care today because of poor literacy and communication skills in this country. At the Iowa Health and Literacy Working Together Conference many of these issues were brought to the surface. 

My thinking about what has happened and what should come next after this conference:
Adult learners were there to help the AMA make their video, “Health Literacy - Help Your Patients Understand”, and some of the adult learners who were at the Iowa Conference were also in this video. This video could not have been possible without the help of the adult learners. The video has reached and brought awareness to thousands of doctors all over the country and it is still reaching more. Now The New Readers of Iowa have a model health literacy conference to work from. The next step should be a health literacy summit where adult learners who have experience in health literacy meet face to face with the medical field to build better communications.

Archie Willard
Adult Learner

The Information below was compiled at the Iowa Health and Literacy conference by Maricel G. Santos and Lisa Soricone from the Harvard School of Public Health. 


What the adult learners generated

Part I. Challenges and barriers.  In groups, the learners examined the picture prompts and then discussed the following questions:

1.    What common problems related to these activities do you notice?
2.    What kinds of things should adult learners do to try and overcome these difficulties? 
3.    What kinds of things do you think doctors and nurses should do to make things easier for adult learners?
4.    What kinds of things do you think adult educators should teach so that adult learners are better prepared to handle these difficulties?

Here is a summary of their responses.

Message to medical professionals
Make instructions more readable
Bigger print on read-outs, ranges
Make steps clearer
Explain what is ‘high’ /’low’ – the range
Make sure prescription is filled correctly
Tell us when pill colors change
Keep pharmacy informed about prescriptions (like when my medications change)
Doctors should write clearly
What is the reading level of prescription labels?
Explain medications when prescribing
What is it? What’s it for? How to take or use it?
Treat us with respect – don’t be in a hurry, and we’ll treat you with respect
Use more picture symbols in instructions
Information about drugs – reactions, instructions
Clearer information about side effects
Simplify instructions – explain or read
Don’t assume that patients understand and can read
Don’t feel sorry for us.
We won’t take ‘no’ for an answer
Print info in other languages

Message to adult educators
Be aware of students who have illnesses
Take the time to help with students’ questions
Better explanations from teachers and doctors
Looks may be deceiving
Learn that we won’t take ‘no’ for an answer

Message to adult learners
Tell your teacher that you have a condition/disease
Ask teacher for help
Know your medical conditions (reactions, history, allergies)
Repeat what the doctors say “What I heard you say was…”
Open up prescription at store
Don’t focus on “I can’t read.” Instead, say “I don’t understand the label.”

Part II.  Drafting the literacy statement.  The adult learners worked in groups to craft a statement which captured what they wanted to say about health and literacy.  This message will be sent out to people who work in the medical field.  The adult learners were asked, What do you want to tell doctors, nurses, and other health professionals about adult learners like yourselves?  Here is a summary of their statements:

Draft Statements

1.    Slow down, take your time, be responsible to me as a patient.

2.    Make sure patients understand about their meds and their treatment before they leave the office.

3.    We want you to try and understand us more.

4.    You respect us and we’ll respect you.

5.    Once you find out we have reading problems, you should do follow ups.

6.    Ask us questions to make sure we understand about our health care.

7.    We have always been here. We’ve always been the backbone of this country.  We need help from doctors now.  We need the best explanations about tests, procedures, and prescriptions.  We are human beings that need to be understood. We need help to help ourselves and our families. It’s about human respect. Yes, we lack skills. But we are not less than. 

8.    Speak clearly.

9.    Wash hands before treating us.

10.    Explain side effects so we can understand.

11.    Talk to us about prescriptions so we understand them.

12.    Don’t be in a hurry.

13.    What you learn today will last you a lifetime.

14.    Treat your patients like you would like to be treated.

15.    Explain in different ways (pictures, video, etc.) how to take medications, use tools.  


The final statement (the group voted and decided on the following)

Statement #1
We have always been here.  We’ve always been the backbone of this country. We need help from doctors now.  We need the best explanations about tests, procedures, and prescriptions and their side effects. We want to tell doctors, “We need help to help ourselves and our families. Slow down and take your time. Treat us as you would like to be treated. Simplify your work so that it can be cost-efficient for both patients and doctors. Once you find out we have reading problems, you should do follow ups.”

 We are human beings that need to be understood. Make sure that we understand. It’s about human respect. Yes, we lack a skill. But we’re not less than.  

Statement #2
A doctor’s office is no place for a reading test. 

 

What the teachers and health professionals generated

Teachers were asked the following questions:

1.    How does the photo remind you of your own experiences in carrying out similar activities?    
2.    What kinds of challenges might this kind of activity pose to your students?
3.    What do these challenges suggest for your teaching, in terms of:
        a) Skills to focus on
        b) Lesson ideas for teaching those skills in a health context

Here is a summary of their responses:

Challenges
Reading
Terminology
Fixed income
Medicines, heat, food
Time
Numeracy – percents
Abbreviations
Manual skills
Being able to read forms
Language barriers
Apprehension/fear of forms and asking questions
Mobility
Understanding communication 
Ability to ask questions

Skills
Improve speaking skills
Being able to teach back
Listening skills
Assertiveness – ask for help
Math
Organization
Reading/writing skills
Learning healthcare vocabulary
Manual skills
Healthy life styles

Lesson ideas for teaching
Units on healthy eating
Calculator use
Demonstrate pill sorter
List of medicines to carry with them – allergies, surgical procedures, health history
Medical history forms – to practice on
Insurance forms – and practice terminology
Publicize availability of med cards
Demonstration of instruments
Sight word recognition
Health care provider to come in
Log book to record eating time and blood sugar
ClearHealth.com




-- Archie WillardURL - http://www.readiowa.org/archiew.html
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