Sharing our Health Literacy Action Plan Stories - Full Transcript - Health Literacy Discussion List - Literacy Information and Communication System(LINCS)

Sharing our Health Literacy Action Plan Stories
Full Transcript

Discussion Announcement | Guest Facilitator

Hi Everyone,

Welcome to our Story-Sharing week! I am very pleased to encourage us all to share our stories about how our work is addressing the goals of the National Action Plan to Improve Health Literacy. Sharing our stories may seem like a small thing, but it is an important step, which will continue to bring the national community of health literacy together as a field, enabling us to learn from each other and inspire each other.

The National Action Plan to Improve Health Literacy is an important and vital document for everyone with an interest in health literacy. It gives a framework for us to combine our isolated projects into a common purpose for the nation, and gives us specific strategies for reaching our goals.

Last September we had a discussion on this list about the Action Plan with Cynthia Baur. We learned about the Plan's 7 goals and each goal's specific strategies to help those of us from a very broad range of community groups to participate in this national effort. The purpose of this week's discussion is to give you an opportunity to share with your colleagues your story on what you are doing to improve health literacy in your organization. We want you to tie these efforts into the National Action Plan.

We welcome our guest, Michael Villaire, Chief Operating Officer of the Institute for Healthcare Advancement (IHA). Michael has edited several medical journals and written extensively about health literacy in various medical contexts. He co-authored two books: Health literacy in primary care: A clinician?s guide and What To Do For Heavy Kids. Perhaps most importantly, for the past ten years he has led the nation's first annual conference solely dedicated to health literacy. The IHA's Health Literacy Conference, held in Irvine, CA every May, has brought health literacy advocates together for a decade, and continues to do so. This year (next week!!), the IHA conference will host a live, national social media discussion on the National Action Plan. We hope that the stories we share in the list this week will pave the way for many others around the country to participate in this social media event!

Please see this link for more information about the social media event, which will take place on May 4th at 12 noon Pacific Time /3 PM Eastern Time (the day before the IHA Health Literacy conference).

Michael will help us tie our stories into the Action Plan's 7 Goals, and will host further activities to collect and organize the stories into a searchable record of what is happening around the country.

Here are a few questions to help guide us on the week's discussion:

  • What are you doing to improve health literacy at your organization? Please share this in story format.Take a look at the National Action Plan, bottom of page 1.
  • Which goal or goals does this effort fit into?
  • How can you use this effort to build on for the future?
  • Can you do a little more in this area in the next month/quarter/year?

Don't be afraid to share your story. No effort is too big or too small. We want to know what you're doing!

Please take some time now if you can, to pull your story together in your mind. Write it down in story form and send it in!

I am hoping to hear from many different people and organizations, so we can see just how broad this effort is!

All the best,

Hello to my colleagues on the LINCS Health Literacy listserv. First off, a big "Thank You" to Julie McKinney and the LINCS Health Literacy Listserv for agreeing to host this discussion this week. We are very excited to hear about what everyone is doing with the National Action Plan to Improve Health Literacy. As Julie mentioned, the Institute for Healthcare Advancement (IHA) is having a special preconference session on Wednesday, May 4, from noon to 1:30 pm Pacific Daylight Time on the National Action Plan that will be open for participation nationwide (and worldwide, for that matter). This live, interactive, social media discussion can be accessed from your computer, and for those attending our 10th Annual Health Literacy Conference, you will be live in the ballroom and welcome to share your own story there, time permitting.


I'm a big believer in the power of story. This medium has been around since we first learned how to communicate, and is a powerful means to draw connections among ourselves and our good work. We learn from each other's efforts, relate it to what we do, and this stimulates questions, ideas, and helps spark our creative process. Stories bring us together and strengthen our sense of connection and community.

This week, as you think about your own story, take a moment to view it through the lens of the National Action Plan. This incredible document has tremendous potential as a tool to not only help us document our own efforts, but it also has the ability to bring together others working toward those same goals. I believe we will be hearing this week from the National Action Plan's primary author and champion, Cynthia Baur, Ph.D, on this unique aspect of the Plan, as well as other insights into how we can make the Plan work in our own spheres.

Our good friends at Health Literacy Missouri will be producing the social media aspect of this program on May 4. However, for those who have not yet taken the plunge into social media, you still have ample opportunity to participate. Sharing your story on this listserv this week is one great way. I'll weigh in as appropriate during the week with some additional comments and questions from your posts.

Here's some information from Health Literacy Missouri on how to participate in the IHA session next week:

  • LIVE VIDEO: If you cannot attend the conference, watch the session live. About a half-hour before the chat, go to and click on the link to the UStream live video. (Note: This link will NOT be up or working until just before the session)
  • IN PERSON: If you're attending the session, please stand up and share your health literacy stories and work.
  • DISCUSSION BOARD: If you're watching the live online video, click on the discussion board tab to the right and log in. You can post message about your work and respond to other's posts.
  • FACEBOOK: Click on the Facebook tab next to the live video screen, connect to your Facebook account and join a conversation with other logged in users. (Note: A message will show up in your Facebook news feed that says you're participating in the event, but your posts during the discussion will not show up in your news feed.)
  • TWITTER: Go to, sign in to your Twitter account, and type "healthlit" in the "enter hashtag to follow" box at the top of the screen. This will connect you to a live conversation with health literacy experts from across the country.

Stories collected before the event as well as posts on the discussion board, Facebook and Twitter may be read aloud during the session. (Please note: If you're attending the session, wireless Internet will not be available in the ballroom to ensure organizers have a strong Internet connection to run the event. Please share your stories in person or use a smart phone to access social media.)

If you have questions about how to participate, e-mail

Thanks everyone. Dig out those stories, read through the National Action Plan summary once more, and share!

Michael Villaire, MSLM
Chief Operating Officer
Institute for Healthcare Advancement
(562) 690-4001 ext. 202

Hi Folks,

In order to help us share our stories this week, I am giving you all a cheat sheet of the 7 goals of the National Action Plan.
Here's what to do:

  1. Copy the list of 7 Goals from below and paste it in a word document.
  2. Highlight the list and put it in a numerical list format.
  3. Change it to your favorite font style and size. (...and decorate as you like.)
  4. Print it out.
  5. Tape it up to your desk area.
  6. Look at the goals now and then and think how your work addresses any of them.
  7. Write a short email to the list telling us the basic story of what you are working on.

(7 Steps for the 7 Goals! ;-)

I know I'm pushing, but please send in some stories! I'll post some examples soon.

All the best,



The 7 Goals of the National Action Plan to Improve Health Literacy:

  1. Develop and disseminate health and safety information that is accurate, accessible, and actionable
  2. Promote changes in the health care system that improve health information, communication, informed decision making, and access to health services
  3. Incorporate accurate, standards-based, and developmentally appropriate health and science information and curricula in child care and education through the university level
  4. Support and expand local efforts to provide adult education, English language instruction, and culturally and linguistically appropriate health information services in the community
  5. Build partnerships, develop guidance, and change policies
  6. Increase basic research and the development, implementation, and evaluation of practices and interventions to improve health literacy
  7. Increase the dissemination and use of evidence-based health literacy practices and interventions

Julie McKinney
Health Literacy List Moderator
World Education

Goal #2 Promote changes in the health care system that improve health information, communication, informed decision making, and access to health services.

Before the WI Health Literacy Summit I was approached to look at what we are going to call one section containing the patients diagnoses that will appear on the Patient Portal Health Summary pages and the Plan of Care document patient leaves with in hand at the end of their appointments. The suggestions from our Information Systems folks were: Problems/Procedures or Conditions/Diagnoses. Looking at other sources of information that patients receive, I suggested some thing like Health Problems/Health Conditions.

The Patient Education manager then spoke with about 14 people, 9 of whom were patients sitting in the Urgent Care waiting room, and 5 were support staff. Results were:

  1. Health condition and diagnosis usually meant the same to patients; health problems and diagnosis often meant the same as well. The patients were confused what the different would be between these four items.
  2. The health problem and health condition terms seemed to be understandable because the patients were able to say the problem would be why they are here and their condition was identified as a "disease" usually.

I returned from the WI Health Literacy Summit and Pre-summit Training with Audrey Riffenburgh with a new perspective and have requested to review all of the sections in the Patient Portal Health Summary pages and the Plan of Care document and make recommendations from a health literacy angle.

Eva Scheppa RN/BSN
Family Health Center/Marshfield Clinic
Institute for Quality, Innovation and Patient Safety

Eva, this is a great story. It highlights the benefits and great results we can get when we use focus groups and end users to vet not only our materials, but the language we use. How else would anyone have known that "health condition" and "diagnosis" were essentially indistinguishable terms to the patients?

I'm glad you came away from the Wisconsin conference energized. I did, too. Hats off to Michele Erikson and her staff and collaborators for a wonderful conference. Thanks for sharing!

Michael Villaire, MSLM
Chief Operating Officer
Institute for Healthcare Advancement
(562) 690-4001 ext. 202

Thanks, Eva!

Here's one of mine:

Goal 1: Develop and disseminate health and safety information that is accurate, accessible and actionable.

Years ago, the Literacy Information aNd Communication System (LINCS: See ) created a group of online "Special Collections" of resources that would be useful to adult literacy practitioners. One of the topic areas was Health Literacy, and through World Education, Inc. I had the pleasure of developing and maintaining the website for this collection.

It is now the Health Literacy Special Collection, which I'm sure you are all sick of me recommending!

I included easy-to-read health information that could be used in literacy and English language classrooms, but also in health education settings. There were also multilingual health resources and web-based activities that could be used in either setting. The big thing that literacy teachers wanted was curricula to address health and literacy skills together, so a list of appropriate curricula is also included. I tried to make sure that there were curricula that were participatory in nature, which is a proven best practice in adult education, AND helps to make the resources "actionable" as stated in Goal # 1.

Last year we had some support to update the collection, and it went through a major overhaul, adding many more resources for the health and medical fields as well as adult education. It now has followed along with the evolution of health literacy to include resources for both ways of the "two-way street", as well as resources for partnering between the two fields.

I guess that makes it also address Goal # 5: Build partnerships, develop guidance and change policies.


Julie McKinney
Health Literacy List Moderator
World Education

In Maryland, we're launching our Health Literacy Maryland initiative June 1 and 2. The central focus is the plan with its seven goals. The process design will engage about 100 stakeholders from all jurisdictions across the state and from multiple sectors including government, education, health services and the media.

Rima Rudd and Cynthia Bauer will address why health literacy is a factor in healthy outcomes, why now is the time to collaborate and what states have done by forming coalitions. They'll be framing the greater environment surrounding Health Literacy Maryland.

Participants will be charged with processing this information and drawing on their own experience to address key questions focused on determining if we have the collective will and energy to collaboratively address health literacy. They will work in groups that will form and reform to mix people and questions for consideration. They will also recommend action steps to take in keeping with the National Action Plan. During the closing session, participants will engage in a clicker-technology exercise to respond to proposed actions and set priorities.

Our story will continue in June.

Bonnie Braun, Endowed Chair and Director,
Herschel S. Horowitz Center for Health Literacy
University of Maryland College Park School of Public Health

1. What ProLiteracy is doing to improve health literacy:
ProLiteracy is currently leading the Keys to Safety Campaign, a national effort to promote home fire prevention and safety education through local adult literacy/ESL providers. Residential fires are a major health hazard; they account for nearly 3,000 fatalities in the U.S. each year, as well as thousands of injuries caused by smoke inhalation and burns.

Through Keys to Safety, ProLiteracy is providing free materials and support to help programs organize fire prevention and safety activities in their communities, independently or in collaboration with area fire departments. Free fire safety materials for teachers and tutors to use with adult learners in instructional settings are also available. To date, 78 programs have joined the campaign, pledging to reach over 7500 adult learners, and the numbers are growing each day. To join us, and get FREE fire safety materials for your program, visit and click on Get Involved. The campaign is funded by DHS/FEMA's Grant Program Directorate for Assistance to Firefighters Grant Program - Fire Prevention and Safety Grants.

2. How Keys to Safety fits into the National Action Plan
Keys to Safety falls under goal one of the National Action Plan: Develop and disseminate health and safety information that is accurate, accessible, and actionable.

One of the core components of the project is the development and dissemination of fire prevention and safety education materials that are easy to read and understand. These materials can help adult learners utilize the healthy practices that can help them protect their homes and families from fire. The materials were developed with input from individuals with decades of experience in the fields of adult education and fire and life safety. The instructional materials combine exercises that reinforce literacy skills with practical activities such as developing and practicing a home fire escape plan and a home fire prevention checklist.

3. Looking toward the future...
As our current grant begins to wind down, ProLiteracy is exploring ways to continue to support this important work. The Keys to Safety website,, will remain online indefinitely, and programs will continue to have access to electronic versions of all of the free fire safety materials developed for the project. As participating programs begin to share their success stories, the website will also be updated with promising practices from the field. We also hope to continue to promote the resources available on the website on an annual basis to encourage programs to make fire prevention and safety education a regular part of their curriculum.

Thanks to all who have posted - great stories so far!

Katie Schisa
Project Manager, Keys to Safety

The California advance directive resource that Linda suggested can be found here:
(Or google "California advance directive easy")

Since Michael Villaire is our guest this week anyway, perhaps he can tell us how it's being used in California.

This is the only example I have ever seen of a patient-friendly advance directive. I have shared it with many people in geriatric care and disability services who agree that, even though it may not be valid for legal use in your state, it is an excellent tool to use alongside your state-approved wording to help patients understand the concept.

Relevance to the National Action Plan Goals:

This resource supports Goal # 1: Develop and disseminate health andsafety information that is accurate, accessible, and actionableAnyone who could work on their health care system's acceptance of something like this would also be working on... Goal # 2: Promote changes in the health caresystem that improve health information, communication, informed decision making,and access to health services


Julie McKinney
Health Literacy List Moderator
World Education

Hi Susana. Thanks for your question. We’ve been quite fortunate to have had Rebecca Sudore, M.D., from UC San Francisco, allow IHA to host this valuable document. This easy to use Advance Directive form won our inaugural IHA Health Literacy Award back in 2002. This document is available in English, Spanish, Chinese, Vietnamese, and a few other languages in the works. Dr. Sudore has done, and continues to do, excellent research with this document. Although there are many articles she has published, here’s a link to one on PubMed that may speak to your question of whether it actually works:

To answer Julie’s question, we don’t really track who uses this document. It is freely available for download on our site here:

Thanks too, Julie, for framing this into the National Action Plan. We’re fortunate here to be able to “stand on the shoulders of giants” in making this form available to anyone who wants it.


Michael Villaire, MSLM
Chief Operating Officer
Institute for Healthcare Advancement
(562) 690-4001 ext. 202

Here's my story...

Health Literacy, Rural Seniors and the Internet

I drive two and a half hours to the Auburn Public Library. That's what you do when you live and work in a rural area, you do a lot of driving. I am on my way to an adult education class being held on the second floor in the library's computer lab. This is the sixth class in a series of classes for "seasoned workers." Each class focuses on a different computers topic or program (e.g. Word, Excel, etc). This class focuses on how to use the Internet. I come in as a guest speaker and teach a group of nine older adults how to use the Internet to search for and evaluate health information. The lesson is one hour and we begin by reviewing vocabulary. I ask "what is a mouse?" Someone in the class shouts out the answer and in their answer I choose another vocabulary word like, "what is a curser" and so on. I also get a good laugh out of the question "what is a "mouse". Then we talk about where people go for health information and how do they know the information in true. We talk about what people can find on the Internet and that not everything on the Internet is true. We then talk about how important it is to find Who, When and What - who developed the site, when was it last updated, and what is the purpose of the site. As a class we then search a health topic of the classes choice using a search engine and we look for who, when and what. We also discuss the meaning of .gov, .com, .org, and .edu. I then demonstrate and some other consumer health information websites and pass out a list of reliable health information websites. I then hand out a treasure hunt activity. One student says, "I'm not very good with computers," so I have students work in pairs so those with stronger computer skills can help those with less experience with computers. Students have to find a variety of items using the website. This activity helps students get familiar with the site. They have to find a picture of a mouth and teeth, an easy-to-read fact sheet on secondhand smoke, information on ear infections in Somali (there is a growing Somali refugee community in the Lewiston/Auburn area) and so on. The first person to find each of the items on the site gets a copy of What Can You Do for Senior Health. Finally, I review and ask students what they would do if they couldn't find the information they were looking for, and I recommend they ask a librarian. Lastly, I handout my little post-training evaluation and the class ends. It's not a big story but it's working with people to help improve health literacy and that's what it's all about.


Sabrina Kurtz-Rossi, M.Ed., Principal
Kurtz-Rossi & Associates
781-835-6488 phone; 781-391-4409 fax;

Sabrina, I think this is a fabulous story. It's also a perfect example of an effort that doesn't have to affect thousands of people. This class targeted a very specific aspect of health literacy, i.e., computer literacy within the domain of health. In fact, this meshes exactly with one of the Ratzan & Parker definitions of health literacy, "The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions." Your efforts helped them learn how to obtain, evaluate (process), and understand (ask a librarian!) health information online. This is a very meaningful contribution, and I'm willing to guess, those in the class would say this was a really big story! Joseph Campbell said, "A hero is someone who has given his or her life to something bigger than oneself." I think this applies to the teacher in all of us.

Michael Villaire, MSLM
Chief Operating Officer
Institute for Healthcare Advancement
(562) 690-4001 ext. 202

Well this is not a story but here is what Kurtz-Rossi & Associates is doing to advance the National Action Plan to Improve Heath Literacy. The strategies used also mirror those described in the action plan. I will write up a story from one of these projects to better fit the theme of the discussion.


Kurtz-Rossi & Associates
Health* Literacy* Education * Evaluation

Sharing Our Health Literacy Action Plan Stories!


  1. Develop and disseminate health and safety information that is accurate, accessible, and actionable
  • Edited Planting the Seeds: A Guide to Healthy Eating to improve reading ease. Reviewed by members of the River Valley Healthy Communities Coalition, a community-based organization in rural Maine.
  • Teaching older adults about health information on the Internet and working with public librarian to ensure community access and support (on-going).

Strategies used: leveraging technology, ensuring access to the internet, creating documents and testing them with consumers.

  • Promote changes in the health care system that improve health information, communication, informed decision making, and access to health services
  • Presented at Middlesex Hospital in Connecticut to help raise awareness and offer strategies including teach-back, Info Rx, speaking in plain language, shame free environment, Questions are the Answers, and AskMe3 to improve patient-provider communication among hospital-based health care providers.
  • Presented at Nevada School of Medicine in Reno to help raise awareness and offer strategies including teach-back, Info Rx, speaking in plain language, Questions are the Answers, shame free environment, and AskMe3 to improve patient-provider communication among geriatricians and others working with seniors.

Strategies used: using proven methods for checking for patient understanding, using technology to expand patients’ access to health information, creating patient-centered environments, referring to medical librarians.


  • Incorporate accurate, standards-based, and developmentally appropriate health and science information and curricula in child care and education through the university level
  • Developed and implemented Health Information Literacy Who Can You Trust? Sourcebook for youth and young adults in middle and high school and a non-formal adult education program.
  • Developing and teaching medical, dental, nutrition, public health and health communication students about health literacy and strategies including how to work with interpreters and CLAS for improving patient-provider communication.

Strategies used: partnering with hospitals, clinics, health care providers, librarians and adult education, providing professional development for teachers and health educators, teaching topics and skills that are age appropriate, incorporating health literacy education into existing health and computer instruction in grades k - 12


  • Support and expand local efforts to provide adult education, English language instruction, and culturally and linguistically appropriate health information services in the community
  • Working with project HOLA in Dover, New Jersey where Zufall Health Center in collaborating with Morris County Office for Hispanic Affaires is integrating health literacy into ESL and Computer Training Program taught in Spanish.

Strategies used: support community-based programs, infuse health literacy into curriculum, facilitate collaboration with medical librarians, train more librarians in health literacy, create opportunity for health education and training in communities using technology, provide professional development for those teaching adult learners and ESOL, build partnerships with community and libraries.


  • Build partnerships, develop guidance, and change policies

Co-authored the Calgary Charter using a definition and of health literacy intended to support the development of curricula and evaluation tools that improve the health literacy of the public and of those who work in any capacity in health care or related fields.

Strategies used: education policy makers and others decision makers about the need and importance of health literacy,


  • Increase basic research and the development, implementation, and evaluation of practices and interventions to improve health literacy

Design and implement evaluation component into all my intervention work.

  • Evaluating Focused Health Information Literacy Outreach project as a new approach of the National Network of Libraries of Medicine - New England Region to improve health literacy skills and promote the use accurate and reliable health information websites such as

Strategies used: develop and implement health literacy interventions based on theory and models, explore technology based interventions to improve health literacy, explore effectiveness of evaluation and implementation of health literacy interventions.


  • Increase the dissemination and use of evidence-based health literacy practices and interventions

Kurtz-Rossi, S, & Duguay, P. (2010). Health Information Literacy Outreach: Improving Health Literacy and Access to Reliable Health Information in Rural Oxford County Maine. JCHI 14:325-340.

Strategies used: report on findings of what worked and what didn’t


Sabrina Kurtz-Rossi, M.Ed., Principal
Kurtz-Rossi & Associates
781-835-6488 phone; 781-391-4409 fax;


Thanks for your lovely story (in the other email) and this compilation below! I want to note for others how you used, and listed here, the strategies provided in the Action Plan for each Goal.


Julie McKinney
Health Literacy List Moderator
World Education

Here's another story- which primarily addresses Goal #4: Support and expand local efforts to provide adult education, English language instruction, and culturally and linguistically appropriate health information services in the community.

This year I have been conducting a series of health literacy training workshops for adult literacy tutors in Literacy Volunteers programs around New Jersey. The workshops are designed to raise awareness about health literacy and to help tutors gain a better understanding of the vast array of literacy related tasks and skills needed to navigate the healthcare system. Tutors are also introduced to real life materials and resources that can be integrated into their lessons. For example, each participant has received a copy of Staying Healthy (Florida Literacy Coalition). We also examine the excellent IHA series of "What to Do" books.

One tutor obtained What to Do When Your Child Gets Sick to use with an ESOL student who has young children. During a health literacy lesson that included a discussion of ways to prevent injuries, the tutor discovered that her student does not use car seats. This critical health/safety issue might never have surfaced if health literacy had not been integrated into the lessons. In this case the tutoring has resulted in increased knowledge on the part of the student that led to a behavior change (use of car seats).

Just one story - - but impact is powerful.

Elissa Director


Thanks for sharing this story and for reminding us about Goal # 4! All of you out there who are working in adult education have a big role to play in this Plan, as Elissa's story shows!

What are others from Adult Eduction doing?


Julie McKinney
Health Literacy List Moderator
World Education

Elissa-- Thanks for the plug for the Florida Literacy Coalition!

FLC efforts has focused most of its energy on the following two goals of the National Action Plan:

Goal 4: Support and expand local efforts to provide adult education, English language instruction, and culturally and linguistically appropriate health information services in the community

  • FLC has developed three sets of health literacy curricula aimed specifically for ESOL or family literacy programs. The core curriculum, Staying Healthy, covers multiple topics including hospital visits, medicines, nutrition, etc. Last year two additions were printed as well, Women's Health and Coping with Stress. These curricula were designed in a way so that instructors do not have to be health experts to teach health content and health communication. But instead, these curricula empower adult learners to be advocates for their health and that of their families and to truly engage in a two-way conversation with their health care providers.
  • Provide trainings to ESOL and family literacy tutors and program managers to implement or expand health literacy instruction
  • Award mini-grants to ESOL and family literacy programs in Florida to implement health literacy programs

Goal 5: Build partnerships, develop guidance, and change policies

  • Through the support of Blue Cross and Blue Shield of Florida, we have been able to offer 46 mini-grants of up $5,000 the past three years.
  • We have partnered with Healthy Roads Media to offer one of our chapters in a video format
  • We encourage grant recipients to develop partnerships in the community. Our grantees have benefited from almost 70 new partnerships-either via a field trip, classroom visit, or from health fair at their schools. These partnerships have included, county health departments, local hospitals, local YMCA, American Lung Association, WIC, Florida KidCare, and many, many more. One amazing-and unexpected-is from a community college that visited their county Soil and Water Conservation Office. They all learned that the county would check well water and build a new one, if necessary - FREE of charge!

These are just a few of the ways we're trying to work on the National Action Plan here in Florida. Look forward to hearing from everyone else's stories!

Naomi Soto

Naomi Soto
Health Literacy Program Coordinator
Florida Literacy Coalition
250 N. Orange Ave.
Suite 1110
Orlando, FL 32801
Phone: 407-246-7110 X209
Fax: 407-246-7104

Hi all,

I come at this from a community-based practitioner angle, working with people with intellectual and developmental disabilities.

I've been working on a poster presenting the tool I've been germinating for about 8 years and is finally in print for dissemination. So I think this fits under:

6. Increase basic research and the development, implementation, and evaluation of practices and interventions to improve health literacy

With a focus on the development and implementation piece. I am copying the draft text of the poster here, and will share a link to a pdf you can grab from my website later this week if you are interested.

Regardless of the poster, I am very pleased with the tool, "Cooking by Color: Recipes for Independence." For a look at the tool, head to my website:

* Let Color Be Your Guide! Recipes for Indpendence *

Communication is:
55% Visual
37% Verbal
7% the actual message.

There is a great movement in the disability community. Thanks to the Olmstead Act1, government programs are now compelled to encourage community living for people with intellectual and developmental disabilities (IDD). The goal is to promote quality lives within a person’s community. However, practical education and community-based supports for health promotion and self-determined health care management is lacking in implementation. Based on the 2006 National Survey of Children with Special Health Care Needs2, a mere 41.2% of young adults with special health care needs received services needed for successful transition to independent living, including health care, life skills, and employment skills. People with autism fared worse, with 20.8 % meeting this goal, and for people with Down syndrome, it is a disturbing 13.7%.

Community-based practitioners can create evidence-based tools using evidence-generating processes such as focus groups, evaluation, and redesign as a part of their community-based practice. In the area of intellectual and developmental disabilities (IDD), this happens often, though is rarely shared.

The following describes a multi-year practice-based process for creating Cooking by Color: Recipes for Independence, a practical tool contributing to successful transition to independent living and life skills for adults with intellectual and developmental disabilities with health promotion in mind.

* The Project *
One of the first areas of interest for young adults moving into community-based settings is cooking. A review of available tools to provide support and education revealed that most cookbooks written for people with disabilities are designed to yield 6-10 servings, are limited in recipe scope and variety, and offer a high percentage of high fat, low fiber recipes. The use of color coding and visual cues is a common theme, though design, font, and word choice often diminish their power to promote independence.

A group of students in a post secondary program for people with IDD served as the initial focus group and pilot recipe testers. Participants preferred information presented in a list format, a clear listing of equipment and food needs, the time needed to make the recipe, and that recipes are not “childish.”

* Recipe Design *
Recipes were designed by combining best practices in health literacy as well as special education. Many of these strategies are highlighted in the recipe map to the right.

* Best practices for health literacy include: *


  • Choice of high contrast colors.
  • Use of clear language.
  • Capitalization at the beginning of sentences in lists.
  • Use of white space and color to help organize concepts.

* Best practices from special education and universal design for learning include: *


  • Use of color-coded measuring tools.
  • Suggested measuring tools include unique measurements that reduce stress related to recipe-related math (2/3 cup measure, 3/4 cup measure, and 1 1/2 Tablespoon measure).
  • Use of visual strategies such as color coding, photographs, and icons.
  • Consistent design style for icons.
  • Visual cues provided before the task statement.
  • Use of background-free images.
  • Checklist format for lists.
  • Font selection for styles similar to handwriting (e.g., “a” vs. “a”).
  • Directions list discrete steps one-at-a-time.
  • Directions have a clear beginning: “Wash your hands.”
  • Directions have a clear end: “You are done.”

* Best practices for health promotion include: *

  • Built-in portion control.
  • Tips and reminders to balance meals.

* Recipe Testing *
The recipes were enjoyed and tested by a variety of individuals with IDD in various living arrangements including post secondary programs, individual apartments, group homes, and family homes. Feedback from the recipe testers resulted in many improvements to the format, visual cues, photographs, and wording. For example, early editions listed, “Foods I need,” Tools I need,” and “What I need to do,” early reviewers (people with IDD) preferred the use of the term, “Directions.” Those with limited reading skills see the word “directions” and “instructions” frequently. The recipe testers identified and understood the word, “directions” more quickly than reading the sentence, “What I need to do.”

A very important element to Cooking by Color is the use of color-coded measuring tools as visual cues. The suggested tools, OXO Good Grips®, have color-coding built in to the measuring cups and spoons. This brand also includes measuring tools for amounts that that typically require recipe-related math: 3/ 4 cup, 2/3 cup, and 1 1/2 Tablespoon. Another important feature is the attention to grip design making the tools easier to handle for people who struggle with fine motor skills. Most important, the OXO Good Grips® brand is widely available in community stores at a reasonable price.

* The Result *
The result is Cooking by Color: Recipes for Independence, an original and unique tool for health promotion for people with IDD. The tool is particularly appropriate for young adults and those who are learning to live independently in community settings.

The definition I use for health literacy for people with IDD is, “to be able to find health information, understand it, and use it to take action to improve health.” 4 * Cooking by Color * is a tool that people with disabilities can understand and use to make decisions about food preparation and act on them.





  1. Hogdon, L. Visual Strategies for Improving Communciation: Practical Supports for School and Home. Quirk Roberts Publshing, 1995.
  2. Child and Adolescent Health Measurement Initiative. 2005/2006 National Survey of Children with Special Health Care Needs, Data Resource Center for Child and Adolescent Health website. Retrieved 04/25/11 from
  3. Serving People with Disabilities in the Most Integrated Setting: Community Living and Olmstead. US Department of Health $ Human Services. Retreved 4/20/11 from
  4. “What is ‘Health LIteracy’?” Health Literacy for People with Intellectual and Developmental Disabilities. Retrieved 4/25/11 from

Joan Guthrie Medlen, M.Ed, RD
Just released: Cooking by Color: Recipes for Independence.

Thanks, Joan!

I like the way you list the best practices for health literacy, and those for special education and universal design for learning. It seems to me that we in health literacy can learn some important practices from the special education community!

I think this also shows how universal design can work so well as long as we heed Christina's oversimplifying message, and we respect people's "adultness."


Julie McKinney
Health Literacy List Moderator
World Education

Hello all,

Here is the story of Health Literacy work at St Vincent Charity Medical Center in Cleveland, Ohio and how it fits into the national action plan!

Goal # 2

Promote changes in the health care system that improve health information, communication, informed decision making, and access to health services.

The formation of the Health Literacy Institute at St. Vincent Charity Medical Center began in 2007 with funding from the Sisters of Charity Foundation of Cleveland. SVCMC began its Health Literacy Initiatives in collaboration with Project: Learn, Greater Cleveland's premier adult literacy center. Our over arching goal is to institutionalize health literacy across the continuum of patient care.

The Health Literacy Institute is made up of an interdisciplinary team of Caregivers who are steadfastly dedicated to improving health through better communication. Our team's goals have been to rewrite patient education materials to an 8th grade reading level or below, provide health literacy training to all staff, rewrite policies to incorporate health literacy language and to involve adult literacy students in the development of health literacy practices.

To date, over 100 patient education documents have been rewritten to an average 6th grade reading level. We have revised our Informed Consent form and it is currently in the process of Med Exec review. We have provided health literacy training to all hospital Caregivers and provided three, 1-hour workshops for our Medical Residents. We are working with the program director of our residency program to incorporate Health Literacy programming into the curriculum. The topic of health literacy is now included in general hospital orientation and annual whole house and clinical competencies. Per our administrative policies related to patient education, using plain language and the teach back method is required in all provider communication. Finally, we completed a hospital "Navigation Tracer" based on tools from Rima Rudd's work in The Health Literacy Environment of Hospitals and Health Centers. We had 3 groups of adult literacy students complete a tracer and based on findings, changes are being made to hospital signage. For example, Radiology will now be called X-ray and admitting will be called Patient-Check-In.

Goal # 5

Build partnerships, develop guidance, and change policies

SVCMC is currently partnered with Project: Learn to rewrite patient education materials and provide Health Literacy training to outside organizations including the Visiting Nurses Association, Metro Health Medical Center and the Cleveland Department of Public Health. We have now partnered with these organizations to plan our inaugural Ohio Health Literacy Conference to be held this October. (Save the date and a call for abstracts will be posted this week!).

Goal # 7

Increase the dissemination and use of evidence-based health literacy practices and interventions

The Community Outreach department has developed a Train-the-Trainer Curriculum Manual tailored to fit the needs of Community Health Workers and frontline clinical staff. They will present three Train-the-Trainer workshops this summer.

Also, with support from a City of Cleveland Council Resolution, we will begin workshops in the community this summer to increase health literacy awareness and provide tools for improved communication.

I've enjoyed reading the stories posted so far. Thanks to Julie and Michael for a great discussion week!

Healthy Regards,

Karen Komondor, RN
Director, Education
St. Vincent Charity Medical Center
For the Heart of Cleveland
2351 E. 22nd Street
Cleveland, Ohio 44115
office. 216.363.2553
pager: 216.819.5609
fax. 216.694.4664

Karen, your story is a great counterpoint to Sabrina's "little" effort. Everything we do is important, whether we affect 20 people or 20,000 people. There is a ripple effect in each of our efforts that tends to carry on after our initial contact. Raising awareness tends to lead to questions, which in turn promotes learning and understanding...and more questions.

What I really like about Karen's model is its collaborative element, using the Health Literacy Institute as the organizing entity. While you were fortunate to have a funding source such as the Sisters of Charity Foundation, I don't think this is necessarily a requirement. For those who are considering using this model in their own organizations to bring other groups together, think about existing groups, or places, or meetings when potential collaborators meet anyway, and tag on an organizing session onto that meeting. Ask about having space donated for meetings. The important piece is to get together, talk, plan, set goals, and start taking those baby steps.

For those who are attending the IHA Health Literacy Conference, right after the 90-minute live Internet event, we're having a session on How to Write Your Own Action Plan. We'll walk through some of the steps and exercises to put together a framework of a plan to get you started. (My thanks again to Stacy Robison from for her help on putting together materials for that session.)

Who else out there is working in a collaborative fashion and can frame those efforts within the National Action Plan? I'm very interested in also hearing about some of the challenges you faced, and how you overcame those challenges. In particular, funding, lack of support of a champion or advocate, getting the time commitment from colleagues, etc.

This is great! Keep those stories coming!


Michael Villaire, MSLM
Chief Operating Officer
Institute for Healthcare Advancement
(562) 690-4001 ext. 202

Thanks everyone for the great stories this week and the hard work they represent. It's gratifying to know the National Action Plan is helping you in your work. I have my own brief story and one observation.

If you read CDC's new health literacy blog (and the web metrics people told me yesterday over 1200 people have, thanks!), then you know CDC is undergoing its own internal process of review and decision-making in line with the Action Plan.

I used Goal 5 as the prompt to create and convene an agency-wide Health Literacy Council that will meet regularly. The Council is reviewing and helping vet an agency-wide health literacy action plan for CDC. I used Goals 1-3 and combined Goals 4-7 from the National Plan to customize a plan specifically for CDC. I chose a few strategies for each goal and proposed some specific actions that align with CDC's mission. I have proposed that the agency eventually clear the plan so I can post it on the new web site

In the meantime, in alignment with Goal 1, I am consulting with CDC programs on clear communication methods and practices and doing staff training. Staff include epidemiologists who are a large part of our scientific expertise as well as health communicators and educators who want to know how to persuade their colleagues to use health literacy principles.

Michael V. reminded me that at the IHA conference last year, I commented that the Action Plan can be used not only by one organization for its own planning but also as a collaborative tool by multiple organizations. Those of us involved in the plan's development felt strongly that cooperation among multiple groups in alignment with the Action Plan goals was essential to achieve measurable progress. I still think this is true. I look forward to hearing stories now or in the future about several groups collaborating on goals or strategies and changing practices on a large scale.

Cynthia Baur
U.S. Centers for Disease Control and Prevention (CDC)

Hi everyone - -

The Change Agent has two recent issues that help address many of the below listed action plans -- particularly #1 and #2. Our 2009 "Health: The Big Picture" includes student-written pieces that tell stories of seeking health care; there is information about our health insurance system and advocating for care that meets your needs; there is an interview with students about health disparities; and much more...

Our current issue: "Staying Safe in a Toxic World" again has student-written pieces about lead testing, using safe products in the home, smoking, and taking action to clean up a workplace or a neighborhood. There are many inspiring essays by and about ordinary people who took steps to take care of themselves, their families, and their communities.

The reading level of The Change Agent varies from 3rd to 9th.

All issues of The Change Agent are available for free online at: You do have to fill out a form and submit it in order to get a username and password that will give you access to the current issue and all back issues.

Thank you!

Cynthia Peters
editor, The Change Agent

Once upon a time there was a doctor in Madison, Wisconsin that didn't understand why his patients weren't following his instructions for care.

"Hmm...." he wondered, "could something else be going on here, or am I just not communicating well?"

He surmised that low reading skills might be a factor and after exploring the literacy issue on the web and coming across the NALS data he was shocked!

"How could a problem THIS BIG be happening all around and I didn't even know about it?!!" he exclaimed.

He Googled "Literacy in Wisconsin" and came across a small, statewide literacy organization. He asked to join the board of directors. Within a year he and the director organized the first Wisconsin Health Literacy Summit uniting about 40 literacy providers and health care providers to discuss how they could work together to help make health information understandable for everybody. (Goal 5 - Build partnerships)

A couple years later, the doctor developed a moving PowerPoint presentation, embedding a 4-minute version of the AMA video of patient stories and suggestions for what you can do to address health literacy. He began sharing it with every health and education organization that would allow him 20 minutes or more. (Goal 1- Develop and disseminate health and safety info). He became a bit like Johnny Appleseed, planting health literacy seeds everywhere he went. It wasn't long before a buzz began and lots of requests were coming in for him to present at meetings all over the state and beyond. "Could we clone the doctor?" asked the director of the literacy organization. That being a bit too cutting edge and controversial, they decided to hold a second Health Literacy Summit and create a statewide grassroots health literacy effort involving volunteers in health care and literacy from all four corners of the state. Regional Wisconsin Literacy staff would coordinate their efforts. Soon enough the state literacy organization and these four committees were sharing new health literacy practices within their health care organizations (Goal 2 - Promote changes in the health care system) and supporting adult education efforts through grant-funded interventions that trained literacy tutors in health literacy practices and health curricula resources for adult learners. (Goal 4 - Adult Education).

They began to partner and share information with initiatives in other states like Iowa, Arkansas, Missouri, Kentucky, Minnesota, Texas, Florida, Oklahoma, New Jersey, Arizona and California. The literacy organization developed a new website dedicated solely to sharing health literacy information and hired its first health literacy coordinator to help plan and evaluate health literacy efforts.

Long story short, a third and fourth Wisconsin Health Literacy Summit were called for to allow all the good, evidence-based health literacy practices and interventions to be shared with everyone possible from around the country and even a participant from the other side of the world (NZ). (Goal 7 - Dissemination and use of evidence-based health literacy practices). New partnerships were formed, (Goal 5), and actionable interventions and tools were shared from big, federal research organizations like AHRQ and CDC (Goal 6 - increase basic research) to the smallest literacy council in rural Wisconsin. New states like Ohio, Kansas and Alaska began developing their health literacy plans thanks to support from the CDC planning guide. The Institute for Healthcare Advancement and the Center for Disease Control have developed websites that allow everyone to learn from each other's stories and practices. And now, with the help of an on-line discussion list hosted by LINCS, we can keep the National Action Plan to Improve Health Literacy in the forefront of our efforts to make health information understandable for all.

The End.

Michele Erikson
Executive Director
Wisconsin Literacy, Inc.
211 S. Paterson Street, Suite 260
Madison, WI 53703
608.661.0208 (fax)

Michele, this is just wonderful! And truly in "story form." It's interesting how compelling and so much easier to read information is when put into story form. Those magical opening words, "Once upon a time," certainly have an effect on our attention and expectations when we read or hear them. Thanks for sharing!


Michael Villaire, MSLM
Chief Operating Officer
Institute for Healthcare Advancement
(562) 690-4001 ext. 202

Goal 4: Support and expand local efforts to provide adult education, English language instruction, and culturally and linguistically appropriate health information services in the community Parkway Area Adult Education and Literacy, with funding from Missouri Foundation for Health and support from Health Literacy Missouri, developed and piloted Health Savvy, a framework of resources to contextualize health literacy into each level of ESL and ABE instruction. Health Savvy is not intended to be a curriculum. Rather it is a leveled selection of resources to use within the adult education classroom as determined by student need. The framework can be found at:

Sally Sandy
Parkway Area Adult Education and Literacy
13157 North Olive Spur
Creve Coeur, Mo. 63141

2. Promote changes in the health care system that improve health information, communication, informed decision making, and access to health services

I have partnered with one of our physicians in an ambulatory setting to pilot a program to improve healthcare providers (Nurses, physicians, physician assistants, certified medical assistants, and nurse practitioners) knowledge of health literacy and what resources they have available to improve their communication with patients. To improve their communication techniques and awareness of health literacy resources, we will be creating classes for them in a variety of ways, online, grand rounds, learning modules, cme credit. We will be submitting our IRB mid-May and our currently focusing on Asthma as it is a big admittance to our hospital (both adults and peds) and will help us assess outcomes.

We are focusing on providers first but our goal is to work next on patients and then the community.


Lynne R. Peters
Medical Library
Franklin Square Hospital
phone: 443-777-7463
fax: 410-687-1742

Hello Everyone,

What an impressive collection of stories shared through this listserve! Below, please find the story of Health Literacy San Diego.

Health Literacy San Diego (HLSD) is a joint effort of Community Health Improvement Partners and the San Diego Council on Literacy; our mission is to improve healthcare communication by addressing literacy abilities, language barriers and cultural differences.

Our efforts are based off of recommendations from a 2008 health literacy needs assessment When Words Get in the Way: A Collaborative Plan to Address Health Literacy in San Diego County and follow the National Action Plan to Improve Health Literacy through the following efforts:

Goal 1. Develop and disseminate health and safety information that is accurate, accessible, and actionable

Ensuring that information (including resources and research for literacy and medical professionals) is available on an easy-to access and easy-to-navigate website (

Goal 2. Promote changes in the health care system that improve health information, communication, informed decision making, and access to health services


Goal 7. Increase the dissemination and use of evidence-based health literacy practices and interventions

HLSD is training healthcare providers how to identify and better communicate with patients with low health literacy using evidence-based tools and methods. Participants are trained to: (1) define health literacy and understand its impact on patient outcomes; (2) identify methods to recognize patients with low health literacy and; (3) learn evidence-based methods and strategies (including Ask Me 3 and Teach Back) used to communicate with patients with low health literacy through hour-long interactive trainings customized to each organization. In addition, HLSD conducts 30 day follow up surveys to assess how lessons from the trainings have been incorporated into organizations and offer suggestions to each organization to further improve their health literacy efforts.

Our trainings help healthcare providers to better communicate with patients and therefore improves delivery of health information, communication, informed decision making and ultimately improves access to health services.

Goal 4. Support and expand local efforts to provide adult education, English language instruction, and culturally and linguistically appropriate health information services in the community

HLSD is developing a health literacy curricula customized for San Diego County for adult literacy and healthcare settings to teach learners with low health literacy to navigate the healthcare system, learn health-related vocabulary, fill out forms, better communicate with healthcare providers, and advocate for themselves and their children. Our curriculum is based on the Office of Vocational & Adult Education (OVAE) Research Based Health Materials and Instruction Guide and will be customized to meet the needs of local literacy programs (a range of educational settings and length of classroom instruction) and learners (tailored to ESL and ABE learners) to ensure that it is an effective and easy to use tool for San Diego County literacy programs.

Goal 5. Build partnerships, develop guidance, and change policies

The partnership between CHIP and SDCOL is the first of its kind in the U.S. to combine two collaborative organizations and professional communities (literacy and healthcare) and utilizes the strength and resources from 24 affiliated literacy programs, 23 healthcare organizations and many other community based organizations throughout San Diego County.

Goal 6. Increase basic research and the development, implementation, and evaluation of practices and interventions to improve health literacy

Evaluation of our project includes quantitative pre- and post-test surveys, data analysis and qualitative focus groups. Two sets of follow up focus groups will: (1) detail learners' anecdotal experiences in accessing healthcare and navigating the healthcare system and; (2) be used to assess the healthcare environment and further improve our efforts to increase access to quality healthcare, and better understand the health literacy challenges that low health literate patients and medical professionals face on a daily basis.

Looking forward to hearing many more stories around the Country,


Beth Ruland
Manager, Access to Care
Health Literacy San Diego
Community Health Improvement Partners
9370 Chesapeake Drive
San Diego, CA 92123
phone: 858.609.7967

I'd like to explore the concept of using the Action Plan as an "organizing entity" for collaborative efforts among multiple organizations. This is important since more and more health literacy projects do involve more than one organization, all with their own agendas, goals and capabilities.

How does framing the common goals by using the Action Plan help? How have some of you done this? I'd love to hear more! Cynthia, did you have this in mind when developing the plan?


Julie McKinney
Health Literacy List Moderator
World Education

Yes, we definitely had cross-organizational collaboration in mind. I included a brief comment about that point yesterday in my post. I think many of the stories this week illustrate the power of organizations working together on common goals tied to the Action Plan.

Cynthia Baur

I would like to point out or at least remind everyone on the list, especially those on both the health and the literacy sides, that your state and local refugee agencies are natural allies and interested partners who may well also become collaborative partners. Clearly almost all refugees to the US are among the high need group for all the help health literacy can bring. Medical interpreters and refugee case managers are also allies. I suspect most people may not realize that DHHS contains the Office of Refugee Resettlement which oversees and funds refugee support programs administered in most states through a single office in state government. Their home page now contains an interactive map with contact info for both the state refugee office (which where my office is in Wisconsin) and the related local refugee agencies. Your state also very likely has a State Refugee Health Coordinator, one of whose main responsibilities is to track incoming refugee medical screenings and report to CDC. Again another group of potential allies and collaborators in your state who have a vested interest in promoting access to health and health literacy. If you don't know who or how to contact them, the ORR web site is a good door!

Arthur Upham, PH. D.
Refugee Specialist
Refugee Assistance Services Programs Section
201 E. Washington Ave.
Madison, Wisconsin 53708

Hi Folks: The Literacy Assistance Center has embraced the National Action Plan and is delighted to have helped in organizing the first of the Town Hall Meetings from which the plan emerged. Let me share a couple of things that we have been doing in relation to 2 goals

The following may be seen as elements of the story from the adult literacy side.

4. Support and expand local efforts to provide adult education, English language instruction, and culturally and linguistically appropriate health information services in the community

  • The LAC continues to promote the integration of health literacy into the adult literacy curriculum and instruction by providing professional development to adult literacy teachers using the health literacy study circles approach. The study circles, developed by Dr Rima Rudd and team, have provided teachers with a structured way of incorporating health into their curriculum.
  • Health professionals from hospitals and public health have done presentations to adult literacy students and develop a greater understanding of the linguistic and cultural challenges faced by their patients, who tend have similar characteristics as these students.
  • Adult education teachers have made presentations at new employee orientation sessions emphasizing the language and literacy challenges inherent in working with LEP students and sharing ways in which the former could improve their communication with LEP patients.
  • Adult literacy students also have been invited by one hospital to share their stories with new employees so that the latter could develop an awareness of the health literacy challenges patients face.
  • We have conducted grand rounds for doctors and nurses and workshops for specific groups of health professionals

5. Build partnerships, develop guidance, and change policies

  • We are promoting partnering between adult literacy programs and hospitals and health centers as a way to build community capacity. As the two entities join to address health literacy issues of their common constituency, they will be helping to extend their services to the wider community and making it aware of the existence of low health literacy as an issue.
  • Out of the partnerships have emerged health Literacy collaboratives in four of our boroughs. These collaboratives bring together representatives from health and literacy agencies to discuss the promotion of health literacy in their respective boroughs.
  • The collaboratives and the LAC are hosting a health literacy conference on May 20 and this will assist in providing guidance to the health professionals and health educators on how to address health literacy within the context of preventative health. Dr Baur will be our featured speaker.


Winston Lawrence Ed. D
Senior Professional Development Associate
Literacy Assistance Center
39 Broadway, Suite 1250
New York, NY 10006
Tel: (212)-803-3326
Fax: (212)-785-3685

Hello everyone and thank you for the amazing stories we have been hearing all week. We wanted to remind you that you can also post your stories through the IHA health literacy Facebook page at. We are accepting video and written entries. You can also email your stories directly to Michael Villaire at

If you are planning on watching the pre-conference live event on May 4th from 12 noon to 1:30 Pacific you can do so two ways:

Go to homepage and click on the soon to be posted link that will redirect you to the Livestream video site.

You can also go directly to the Livestream site at:

You are welcome to participate in the discussion during the event via the discussion board on the Livestream page, on Facebook, or through Twitter.

If you have any questions please feel free to contact me directly at

Sam Pettyjohn
325 N. Euclid Ave.
St. Louis, MO 63108

Thank you Sam for posting the links for everyone to participate in this process. I'm very excited that the National Action Plan to Improve Health Literacy is continuing to gain traction within our community; Wisconsin Health Literacy used it as a formative and organizing matrix for their recent conference; Winston Lawrence's upcoming New York City conference does as well. There are many other examples out th.ere as well; we at IHA are happy to help keep the ball rolling.

Please consider, if you've not done so already, pulling together your own health literacy story. We would love to have you share it, and to use it as your stepping-stone to drafting your own Action Plan. However, even if you end up not sharing your story with us (and we really hope you do), share it with your own network. Share it with the organizations with whom you collaborate on other projects. Use it as a conversation-starter about some of your goals, and to explore how your goals and theirs may overlap. Remember, people tend to gravitate toward meaningful relationships that result in goals being achieved. If you start up the conversation, have a clear idea of your own goals, and solicit theirs with a respectful approach of finding common ground, you've accomplished one of the most difficult steps: achieving shared momentum.

As we said earlier in the week, stories are powerful. Stories provide us with a human connection. Go back for a moment and read Michele Erikson's story, and Sabrina Kurtz-Rossi's story. (Read all of them, actually, but in particular, these two.) Once you read these stories, feel the connection with the people and their quests for information and a way to understand and do better something that was important to them.

Your stories have the same potential. Tell us how you or a colleague/client faced a challenge. How did attention to health literacy play a role in overcoming this obstacle? What challenges did you/they encounter? How were these challenges overcome? Mix in the story with your operational solutions. Think about how someone reading your story could apply the lessons you learned and the approaches you used in their own situation. Then use the National Action Plan to describe your efforts in more detail. The stories bring us together and provide meaning; the National Action Plan, provides a method to capture, measure, and a map for the future.

During our live session next week on Wednesday, May 4 at Noon Pacific Daylight Time (1 pm Mountain; 2 pm Central; and 3 pm Eastern), we'll help make these connections between story and action. We'll use real stories to walk through this progression, point out ways in which these efforts could be used collaboratively, and how they might be expanded and built upon within one's own organization.

Take a look at Sam Pettyjohn's previous post (scroll down) on how to participate now by sharing your story, and how to join us live on Wednesday.

Our story sharing continues today, so take a moment out now to capture that story, toot your organization's horn, and take your first step toward your own Action Plan.

Thanks everyone for reading and sharing. We hope to see you next week!


Michael Villaire, MSLM
Chief Operating Officer
Institute for Healthcare Advancement
(562) 690-4001 ext. 202

Hi Everyone,

I have a story that I want to share. And I'd like to know if anyone here on the list can identify with it...

Once upon a time, I was doing my job, which involved trying to help more people get healthy. But I realized that there was an issue that had to be dealt with in order for me to do my work better: I realized that there was a big, nebulous barrier to people getting and staying healthy. I started looking into it and realized that Health Literacy was the name of the issue that had been in my mind, undefined for so long.

So after some searching around, I found this online discussion list.... (You can see where I'm going here, right? :) On this list, I found a whole community of people from different fields of practice who all had an interest in addressing health literacy to do their work better, and help more people get healthy. How cool! Now I didn't have to be the only one at my workplace with a clue as to what health literacy is and how important it is to address. I had comrades now, and even better, they were people who knew about different parts of the puzzle than I did. "Maybe together," I thought, "we can make something happen." My eyes got starry, and my idealism shot upward...

So then one day it got even better! This National Action Plan to Improve Health Literacy came out! I thought "Wow, I'm really not alone in realizing that this is important! The little things I am trying to do here in my little community are part of a larger effort that the whole nation is being encouraged to do together!" I felt supported by not only my online community, but a strategic plan as well. Now I had a structure to use to make my own goals at work. And I could show my boss and funders how it fit into the National Action Plan.

This was really exciting! I felt like the timing was right, and that I had the momentum and support to really make some goals and go for them. So I did!

The End?

No, actually it's the beginning! I am writing my own Action Plan to Improve Health Literacy in my little corner of things. There are people and tools to help me do that, and I am on my way!

Thanks for listening to my story.

Julie McKinney
Health Literacy List Moderator
World Education

Dear Colleagues

At University of Washington Medical Center we are working on the following goal: 1. Develop and disseminate health and safety information that is accurate, accessible, and actionable

We are building a library of non-traditional patient education materials that do not rely primarily on the printed word to convey information. This will address both the issue of functional illiteracy and the issue of widespread health illiteracy.

We are collecting items such as 3D anatomical models, posters, laminated picture cards, interactive kits for patients to practice skills, games, representational models of concepts like how much risk a genetic counseling patient has for carrying a certain disease, pictorial med sheets, DVDs which explain medical conditions or self-care concepts, and so on.

As we collect these items (or information about them) from care teams around the country, we will organize the references and make them available on a public UWMC website for all to share. Each reference will include information about where to acquire the tool and how much it costs.

The reason that we are undertaking this effort is as follows: Nationally, nurses are expected to ask patients how they prefer to learn. This references the known fact that people prefer either reading, hearing, seeing/hearing, or practicing new material in order to assimilate it. But we know that often the care team does nothing to align the way it teaches particular patients even after hearing from the patients that they prefer non-reading methods of learning.

Our aim is to encourage care team members to acquire teaching aids for those of their patients who prefer non-reading methods of learning.

So far, we have found wonderful tools out there from various sources (and we hope that all of you will contact us with more ideas!):

  • A wide variety of inexpensive 3D anatomical models of various body parts. Excellent page-sized laminated anatomical diagrams at a price that allow purchase of one for every exam room.
  • 3D torso models for teaching ostomy care, with supplies and fake fecal material so that the patient can practice his skills.
  • Ideas for teaching genetic counseling concepts of % risk, such as one pink ping pong ball in a large bowl full of green ones.
  • 3D rubber feet which have signs of diabetic vascular emergencies such as bed sores and black toes.
  • Fake food of many types and relevant to many ethnic groups, to ensure good understanding of how to create healthy meals.
  • Simulated clogged arteries and tubes of half-fat fluid to use in cholesterol conversations.
  • We developed a medication sheet that has the specific pills that a patient takes taped onto the page, with a grid showing how many of each type of pill to take across the time of day.
  • And we have found and are developing DVDs and web-based ed modules designed for patients to watch and learn from.

Best regards.

Linda Golley, Manager
Interpreter Services, UWMC alternate phone: 206-598-4425

Hello everyone,

As a new comer to this discussion group, I was fascinated by the variety of approaches as well as the outstanding efforts to addressing health literacy challenges.

I would like to share with you the health literacy work we are doing at the South Texas Border Health Disparities Center at the University of Texas-Pan American.

Stemming from the unique characteristics of our border population (90% Hispanic, high poverty levels, low educational attainment, and limited English proficiency for considerable portions of the population), limited health literacy is a major challenge within our communities. To address this challenge we have been exploring the issue among different population segments and are currently utilizing these findings to design the following interventions within the educational system (high school level) and the workplace (production-level manufacturing workers).


  • Adolescent health literacy: Our preliminary work reveals an association between health literacy and exposure to credible sources of online health information (forthcoming in the Journal of School Health), based on which we are planning to design a curriculum component that promotes credible sources for online health information and the important skills for online health information seeking. This will be followed by an implementation at the high school level and an evaluation. Goals # 3 and # 6.
  • Health literacy in the manufacturing workplace: Based on a series of preliminary quantitative and qualitative studies over the past year, obesity has emerged as a serious health issue among manufacturing workers in South Texas. There also exists a large need for health information sources to enhance knowledge about medical information and community health resources, among others. We are currently designing an intervention that addresses the health information needs of this population as well as target the obesity issue from a health literacy angle, followed by implementation and evaluation. Goals:# 1 and # 6.

The work we are doing is in collaboration with colleagues from the University of Michigan (Melissa Valerio) and the University of Minnesota (Carolyn Garcia). Partnerships and relationships with school districts and manufacturing companies in South Texas have also been established and are being nurtured to raise awareness and promote action to address the health challenges within our communities. Goal # 5.


Suad Ghaddar, PhD
Associate Director
South Texas Border Health Disparities Center
ITT Bldg. Rm 1.404Q
Tel (956) 665-7937; Fax (956) 665-7310

The University of Texas-Pan American
1201 W. University Dr.
Edinburg, TX 78539-2999
fax: 206-598-7806
Improving the Reach of Poison Safety Information through an Innovative Approach

It's been great to read this week of all the efforts to improve health literacy! Thank you all for sharing.

The Clear Language Group members collaborate with many different groups on a variety of projects that meet many of the goals of the National Action Plan. As a member of the Clear Language Group, I'd like to share a story of one our projects.

We (Plain Language Works) began by collaborating with Ann-Marie Krueger at the Banner Good Samaritan Poison and Drug Information Center in Phoenix. She had obtained HRSA funding to field test some existing home safety poison materials. (Goals 1 and 5) Several members of the Clear Language Group field tested the materials with people of all educational levels, ethnic groups, and ages, including Spanish speakers, across the US. (Goals 1 and 4)

During the field testing, a low-income participant who had read the Spanish booklet went home to find that her 2-year-old drank nail polish remover. She told us later that because of reading the booklet, she knew to call her Poison Center. This saved the cost of a trip to the ER. She was jubilant and grateful! We love that story of the direct impact of learning and using new health information. (Goal 1-Actionable info!)

The next phase of the project is to create a new Spanish version which is more culturally-appropriate and is based on results of the field testing. In collaboration with Ana Consuelo Matiella, founder of The Fotonovela Company, and Lorena Sprager, another Clear Language Group member, we are developing and testing a new format we're calling fotonotas (or photo notes). We will be shooting the images next week and are eagerly looking forward to researching the format's efficacy and acceptability. (Goals 1, 4, 5, 6, and 7)

Working with all of you-for vibrant health in our country and world.

Audrey Riffenburgh, President
Plain Language Works, LLC
Specialists in Plain Language and Health Literacy since 1994
Albuquerque, New Mexico
Member, Clear Language Group


Ann-Marie Krueger, MPH,CPH
Banner Good Samaritan Poison and Drug Information Center, Phoenix, AZ

Lorena Sprager
Sprager and Associates, Hood River, OR
Member, Clear Language Group

Ana Consuelo Matiella
Portland, OR and Santa Fe, NM
The Fotonovela Company

Dear Julie,

This is a one-event story that deals with collaboration after a disaster - the Katrina hurricane.

The day after Katrina hit, we examined the health and safety instructions available on line for such emergencies. It was clear that these text-only instructions were hard to read. Paragraphs were jammed with good information, but hard to sort out and remember - especially for people shocked in the aftermath of Katrina. So we volunteered to rewrite and add pictures to make the critical information quickly understandable - and with a turn-around time of 24 hours or less. No contract; just get it done.

On the NIFL list serv, we asked others to help; the response was immediate and positive - many volunteered. Among them was a specialist in toxic waste from Brown University, others from Harvard on sanitation, and two Canadian organizations offered to translate instructions from English to Cajun French, a language of many in New Orleans. These actions relate to items 4 and 5 of the National Action Plan.

This story offers a small example of the ad-hoc volunteer collaboration that is a part of the character of health care providers and others.

best wishes,
Len and Ceci

Mike .... thank you giving me the lead to the story here in Central Mass ... shared momentum.

We started the Central Mass Health Literacy Project as graduate nursing student project out of Worcester State University this year. The initial group comprises of nurses from acute care to rehab, to school, and to home care. Most of us live in the area where we provide care. From our experience with patients, we realize how important health literacy is to ensuring good health outcome across the continuum of care.

Along our journey, we have found national health literacy experts in our area and groups that are already doing great health literacy work. Although we haven't achieved shared momentum yet, we feel that we are on our way.

1. Develop and disseminate health and safety information that is accurate, accessible, and actionable.

We are sponsoring a health literacy symposium on May 11, highlighting health literacy work of health care providers from Worcester State Hospital's Deaf Unit. They have developed over 1000 pictures for educating deaf and low literacy patients on how to care for themselves. The program is free and open to everyone. CEU's are provided as well.

2. Promote changes in the health care system that improve health information, communication, informed decision making, and access to health services

Members of the group are health care providers. Through our work of promoting best health literacy practices and translating scholarly work to evidence base practice, many of our members are integrating health literacy in their own practice as well as promoting the importance of health literacy to their facility.

3. Incorporate accurate, standards-based, and developmentally appropriate health and science information and curricula in child care and education through the university level

At our graduate nursing program, health literacy is a topic for group discussion, group projects, and concept analysis.

4. Support and expand local efforts to provide adult education, English language instruction, and culturally and linguistically appropriate health information services in the community

Again, our upcoming symposium on May 11 will highlight health literacy work with deaf population. The program is free and open to the public. With the support of a community access grant from the Massachusetts Commission for the Deaf and Hard of Hearing, sign language interpreting is provided for this program.

5. Build partnerships, develop guidance, and change policies

We will be working on this objective in the coming year. We have already identified potential partners and local as well as national experts to work with us.

6. Increase basic research and the development, implementation, and evaluation of practices and interventions to improve health literacy

We have not started working on this objective but it would be interesting to evaluate how changes in our own practice affect health outcomes.

Thank you for the opportunity to share our story.

Bet Key Wong, RN
Central Massachusetts Health Literacy Project

Hi Everyone,

I am passing this story on for someone who is not a list member. Thanks to Kimberly Wicklund for sharing this!

Let this also be a reminder to everyone: it's never to late to respond to anything we have talked about on the list, even if the flurry has passed. We will welcome stories about what folks are doing for the National Action Plan any time!

All the best,



Group Health Plain Language Network (Goals 1, 2, and 5)

In March of 2007 a group of 12 Group Health employees met to discuss their common interest in collaborating to eliminate health literacy barriers in the Group Health system. The Network’s founders came from a range ofGroup Health departments: Center for Health Studies, Communications and Community Relations, Health Information and Promotion, Patient Health Education Resources, Patient Safety, and Pharmacy Services. Over time, the group became called the Group Health PlainLanguage Network. It expanded to include 20 departments and over 30 members.

Our primary objective was to promote plain language as a communication standard across our organization, ultimately creating a culture of plain language. Our decision to focus on using plain language frames the problemof low health literacy around the complexities of the health care system instead of the varying skill sets of our patients. It is a solution-oriented approach that cuts across disciplines and supports patient-centered approaches to health care delivery.

The multidisciplinary nature of the group enabled us to support plain language champions in various departments throughout the organization. Those champions raised awareness of the need for plain language in their respectiveareas and could identify specific opportunities where plain language could improve the patient experience.

The Network’s efforts led to a formal initiative at Group Health to promote a culture of plain language. The overarching impact of the Network’s activities is that plain language has been embraced at all levels of theorganization and is now included in the organization’s communication standards.

Other activities and outcomes include: Development of a plain language toolkit for staff that includes: rationale for using plain language; tips for verbal interactions, print materials, and medication instructions; a list of 700+ patient-friendly words; editing examples; and links to otherhealth literacy resources. The toolkit had >1300 hits in its first month and averages 80 hits/month in subsequent months. Educational campaign to raise staff awareness the importance of and rationale for using plain language as a universal precaution. This campaign included articles and blurbs in nearly every type of staff-oriented communication. Training for staff that included Group Health presentations and the interactive online HRSA and NCQA health literacy trainings. Edited all standardized Group Health patient education articles and a number of letters for plain language. Many of those resources have been integrated into standardized workflows in primary and specialty care. Edited our standard consent form templates from 15.1 to 6.6 grade level. We piloted the consent in two specialty departments, and are now exploring organization-wide roll out.

Lessons learned and reflections: Framing our initiative around a solution (plain language) rather than a problem (low health literacy) was instrumental in securing leadership support and wide-ranging buy-in. Plain language is a strategy that clearly aligns with other organizational goals and cuts across silos, engaging staff who may not feel directly connected to low health literacy. Despite new tools and training for staff, requests for plain language editing rose dramatically as staff awareness increased, indicating potential value in providing centralized editing services.

Lastly, we believe our initiative demonstrates that, even with no funding, frontline staff can work together to begin to establish a cas a helpfulexample for other health systems striving to advance health literacy.

Clinical Improvement and Prevention, Group Health Cooperative
PHONE 206-326-3420 | CDS 330-3420
FAX 206-326-2831
200 15th Ave E, CWB-367
Seattle, WA 98112

Although I didn't link my information to the goals, below is my "story."

I am new to this list-serv and new to the "official" world of health literacy, although as an editor I have been working toward making the written word understandable and comprehensible to the target audience for many years. I frequently have told doctors who want to retain complex medical words in a document intended for the general public, when simpler words exist and would work, "If you go to France with a message that you feel is vital for the French people to understand, but they don't really care about, do you translate it into French, or do you expect them to learn English just for you? If you want to be heard, you translate."

Here are some projects that have been ongoing here:

Our preliminary plan of action includes:

  1. Anderson Center for Dental Care at Rady Children's Hospital-San Diego created simplified, easy-to-read oral health information for caregivers of children with autism and of children with Down Syndrome. Research had found that most available information was written at a provider level, not a caregiver level. The fliers are available in English and Spanish, in the shorter versions and longer versions for those who want them.
  2. The San Diego County Dental Health Coalition recently formed a Sub-Committee on Cultural Competency and Health Literacy. We find the two topics to be totally interrelated, especially in this extremely culturally diverse community. San Diego County has become the #1 refugee placement community in the U.S., as well as home to the busiest border crossing in the world. Our Sub-Committee goal is to at least increase awareness among the dental community (read practicing dentists, hygienists and assistants) about the words they use with patients, and how they may not be communicating what they think.
  • Develop information about local cultures, their decision trees, interaction cues and preferences and oral health knowledge and literacy. Make this available for dental teams electronically.
  • Find or develop culturally appropriate oral health information in the languages and appropriate literacy levels related to the cultures identified above.
  • Adapt existing health literacy training developed by San Diego C.H.I.P. to be relevant for dental audience and offer.
  • Find or develop cultural competency training for the dental team and offer.
  • A speaker at a conference this week for dental and medical teams will discuss health literacy with a presentation titled, "Are you Speaking Gobbledygook?"
  • Regarding stories, this is second-hand, but I recently heard a woman talking about a home visiting nurse curriculum regarding pregnant patients that was translated from English to Spanish, basically word for word. Fortunately, the project coordinator spoke Spanish, and reviewed the curriculum before it was put into use. She said there were several words that, while correctly translated technically, became words in Spanish that she would not even repeat to us, much less to a pregnant women on a home visit! Literacy involves context in a language, not just words!

Susan E. Lovelace, Program Manager
Anderson Center for Dental Care
Center for Healthier Communities
Rady Children's Hospital
858-576-1700, ext. 3745

This is a reminder to our friends to join us for our live, national social media discussion of the National Action Plan to Improve Health Literacy, coming to you live from the IHA Health Literacy Conference. You can go directly to the Livestream site. The link goes live at Noon Pacific Time on Wednesday, May 4 (1 pm Mountain, 2 pm Central, 3 pm Eastern). Click on the link and watch and listen. Participate if you feel like it, but listen to the stories and hear how your colleagues in health literacy are using the National Action Plan.

Thanks again to everyone who shared their stories last week, and thanks too to everyone who read them.

See you Wednesday on the Livestream site!


Michael Villaire, MSLM
Chief Operating Officer
Institute for Healthcare Advancement
(562) 690-4001 ext. 202

Hi Everyone,

I want to thank everyone who took the time to write down their story and share it with the list! As Michael said, stories are quite powerful and sharing them can help us all to stay inspired and to feel like we are part of a larger movement.

The National Action Plan to Improve Health Literacy is like a compass, which can help us each to find our path and which can also bind us together (as if magnetically!) to be working parts of a whole. Using this tool, we should all feel that we can continue our great work, large-scale or one-person-at-a-time, from whatever our corner of the country may be, and that together we can improve the health literacy and health outcomes of the U.S.

And I'm going another step, too: I also hope that this National guidance and attention to health literacy can both guide AND learn from other international efforts to improve health literacy. We are all this together.

Lastly, a huge thank you to Michael Villaire for all the work he has done to promote health literacy over the past 10 years with his annual IHA conference, and now for his focus on helping us to share our stories and transition into making our own action plans.

Please tell your colleages and join us yourselves for the Live Social Media/Video Discussion Event this Wednesday! Scroll down through Sam's message for details of the several multimedia ways you can participate. And go to this link for more info:

All the best,

Hi Everyone,

I am here at the IHA conference, where the Social Media Story Sharing Bonanza is getting ready to begin! ("Sound check...twitter check...Facebook check....microphones video feed...check..") And in the meantime, stories are still coming in here on the discussion list. This one is from a colleague at JSI, who had a glitch in posting it herself.

Thank you, Terry, for sharing your story here. And, yes, the personal parts are indeed what make it a story! Thanks again.





I’ve been a list-serve lurker, but seeing stories of those I’ve worked with and admire so much, like Sabrina and Julie, would like to share my story. I’m going to get a little personal, as that is what makes it a story.

I work in public health at the JSI Research & Training Institute. I got started in this field largely because my mother died when I was quite young of cancer and due to its devastating impact on our family, I thought ‘better to prevent illness even than to treat it.’

My area of work was environmental health, and I focused on risk communication. My thesis was The Right to Access, Understand, and Use Community Right-to-Know information. I wanted to be able to share what I had learned about health and the environment so that people could protect their communities. As an initial contribution to Developing and Disseminating Health and Safety Information That Is Accurate, Accessible, and Actionable I wrote a guide Environment and Health: Learn About the Environment Where You Live. Protect the Health of Your Family and Community that helps bring the growing environmental health information to lay community residents.

Since then, I’ve worked with residents in many communities who are at risk from environmental exposures in participatory community-based outreach and research project. I found many can’t use the guide because they don’t speak English and/or have limited reading proficiency. I needed to focus on Culturally and Linguistically Appropriate Health Information Services in the Community using Targeted and Tailored Communication as recommended in the National Action Plan on Literacy. Now I focus on very simple materials, developed through User-Centered Design, as the National Action Plan on Literacy suggests, with residents themselves.

This has been very effective in working with youth in areas such as Lawrence and Boston, MA. These youth are great health promoters for their peers, families, and communities. They also benefit academically from studying environmental health topics that concern them and that they can apply in immediately taking action and developing leadership. It has been clear that engaging youth and their educators in general health, health literacy, and environmental health literacy by Incorporating Accurate, Standards-Based, and Developmentally Appropriate Health and Science Information and Curricula in Child Care and Education can be very powerful.

To Promote Changes in the Health Care Delivery System That Improve Health Information, Communication, Informed Decisionmaking, and Access to Health Services I, and my colleagues, also work information and assist residents overcome barriers to healthcare and other services, such as community services to address asthma trigger factors in homes and lead poisoning prevention services. We train staff from health and service organizations and help them develop and evaluate community health worker/promotora models.

Building Partnerships, Developing Guidance, and Changing Policies has, of course, been central. I’ve worked with state and federal agencies, including the Environmental Protection Program to strengthen their programs and inclusion of affected populations in decisionmaking. Recently a project for the Waquoit Bay National Estuarine Research Reserve was to better engage populations with limited English-speaking in the Reserve's activities. The resulting Waquoit Bay Cultural Needs Assessment developed by pLanguage programs to conduct focus groups, is an example of Increasing Basic Research and the Development, Implementation, and Evaluation of Practices and Interventions To Improve Health Literacy for environmental and open space organizations as they begin to recognize the importance of environmental health literacy and culturally and linguistically competent programming.

Here is a link to a youth project I’m working on in Lawrence.

Not only are the projects I’ve worked with and resulting materials shared on our website, with generous support from the National Network of Libraries of Medicine, we brought several of these youth to Denver as we presented the project at APHA.

I’ve created a PowerPoint on the community-based outreach with these youth and other community partners in Lawrence to share National Library of Medicine low-literacy, online health information. You can download it here. Hopefully you will find these resources useful as we continue to share and Increase the Dissemination and Use of Evidence-Based Health Literacy Practices and Interventions.


Terry A. Greene
JSI Center for Environmental Health Studies
44 Farnsworth Street
Boston, MA 02210
(617) 482-9485
(617) 482-0617 (fax)

Hi Everyone,

I am passing on the statement from this year's annual New Readers of Iowa Conference. Archie Willard, who learned to read as an adult years ago, has been involved with the New Readers of Iowa for many years. He has become a well-known health literacy advocate, ensuring that the voices of new readers are part of the strategy and ongoing conversation about how to improve health literacy from both sides of the equation: the patient and the provider.

His statement from the recent conference is below, but I have also pasted in some previous stories and statements that he has written over the years. Please read about the New Readers of Iowas 17th conference, Archie's personal story and especially the Policy Statement from the New Readers from their 17th conference, which gives health care providers and staff the New Readers' suggestions on how to improve communication.

Thanks very much for sharing this, Archie!




The New Readers of Iowa Conference statement April 30, 2011

The past 22 years The New readers of Iowa have been there for others with literacy problems. When people can not read our communities fail. The New Readers of Iowa have worked to bring understanding about voting, health literacy, fanatical literacy and community literacy. We have gone into schools and read to children told our literacy stories to many different groups. When given the opportunity to give back we feel the joy of living life. One of the New Readers expressed themselves at the conference by saying "This group helped me to believe in myself I can talk to others about my experiences now". We are a extended family- we learn together. Sticking together has made us stronger, In the past we were healed back because of fear and lack of hope. Fear leads us to not having hope and when you don't have hope you can't know what direction you are going in life and if you don't have hope you can't fellow your dreams. We have found peace peace within our self's. By working with these different groups has allowed us to dream again, literacy is bigger then all of us so we need each other.

Archie Willard
New Reader of Iowa



Personal Story from Archie a few years ago: 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 to advocate for the better patient communication with their colleagues.

Archie Willard
Adult Learner
Health Literacy Advocate



The 17th Annual New Readers of Iowa Coalition Conference: “Building Health Literacy Leaders.”

This conference is a promising practice in itself because it brings together new readers with professionals from the fields of health, literacy and learning disabilities, and comes up with solutions and recommendations with input from all of these groups. At the end of this account you will find the policy statement from the New Readers of Iowa, which includes 7 simple recommendations for health care providers and systems that represent promising practices for health care professionals that come straight from the patients who can be hard to reach and communicate with clearly.

Following is an account of the conference by Archi Willard, New Reader and Health Literacy Advocate:

The day before the conference a group of ten Iowa New Readers and some representatives of Iowa Methodist Hospital in Des Moines, Iowa did a walk through of their hospital. The New Readers made little suggestions that will be helpful for people to find their way around in the hospital easier. This walk through was suggested to us by Rima Rudd from Harvard School of Public Health.

There were people at the conference from Adult Education (ABE), the field of health (Iowa Health System), The Learning Disability field and New Readers (from Iowa, Illinois and Missouri). After three years of working together, the Iowa Health System and the New Readers of Iowa have come along way together. The different groups had many different conversations and we all came away thinking a little differently about literacy and health literacy. Having people from all four groups was very helpful.

Margie Gillis, ED.D a Senior Scientist from Haskins Laboratories, and Cindy Brach, M.P.P. Senior Health Policy Researcher at the Agency for Healthcare Research and Quality, were the main speakers at the conference. There were workshops on Understanding myself as a New Reader, Ask Me 3 and Teach Back role playing, Leadership training for New Readers to be leaders for health and literacy in their communities.

In Iowa we have put together a good team of people to put on a conference like this and I want to thank all who have contribute to it.



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

  1. Become familiar with health literacy issues and review advocacy materials produced by:

    The Joint Commission

    Ask Me 3

    American Medical Association

    Harvard School of Public Health

    National Patient Safety Foundation

    National Institutes of Health

    Institute of Medicine of the National Academies

  2. Integrate these concepts and materials into your patient practice.
  3. 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.
  4. 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 verbally review risks of not following through with prescribed treatmeUse the “Ask Me 3” program to encourage patients to understand the answers to these three questions: What is my main problem? What do I need to do? Why is it important for me to do this?
  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. Make required paperwork easier to understand. And provide shame-free opportunities to review paperwork verbally.

Further, we ask for increased collaboration between new readers and health professionals, identifying additional ways to make health care more accessible and safer for all patients.

Dear HL Lincs Members,

I apologize in advance that this is late and not in story format or organized according to the 7 goals. I enjoyed reading the posts and found them helpful and wanted to communicate some of our efforts/activities at Mayo Clinic in Rochester, MN. In particular we have been utilizing many of the helpful documents and research and trying to tailor to the needs of our staff and patients/families.


  • The patient education department began to actively study the issue of health literacy (HL) about 10-15 years ago
  • Have a centralized process in place for developing evidence-based patient education material at a middle school reading level
  • Developed department HL competency; all staff in department are knowledgeable about HL and have skills depending on their role
  • Develop and maintain HL website available to institution with internal and external resources
  • Worked with department of nursing to implement a HL competency in 2008
  • Provide HL lecture as part of new employee orientation (e.g. nurses, residents, medical students, etc.) o Poster for national HL month displayed throughout institution, also at internal continuing education events
  • Provide continuing education lecture on health literacy to provider groups as requested o Included as part of clinical planning process for material development
  • Grand Rounds - (i.e. recent panel presentation with two physician, a nurse, PA and education specialist in which each provided a "story" according to the PEARLS acronym (partnership, empathy, apology, respect, legitimization and support)
  • Developed a relationship with local adult education program (Hawthorne School) to review our materials with adults at risk for low health literacy with the goal of making specific materials more understandable
  • Developed HL proposal and sought institutional approval/support
  • Interviewed a cross section of physicians about health literacy of their patients; found significant differences among primary care versus specialist physicians
  • Would like to find out more about HL needs of Mayo Clinic patients and offer tools to assist providers meet patient/family health literacy needs and increase HL awareness, share research results, dialogue, etc.

Thank you,

Julia Behrenbeck, MS, MPH, RN
Patient Education Specialist - Information Systems
Section of Patient Education
Phone: (507)-266-2546/ Internal Pager (127) 06342
Mayo Clinic
200 First Street S.W.
Rochester, MN 55905