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Panelists of Launching a Health Literacy Initiative: Implementation Strategies and GHDonline staff

Launching a Health Literacy Initiative: Implementation Strategies

Posted: 22 Sep, 2014   Recommendations: 46   Replies: 84

Many studies have shown that the skills required to effectively understand and use health care-related forms of communication are far beyond the abilities of the average person–in fact, only 12 percent of English-speaking individuals have proficient health literacy skills (Institute of Medicine, 2014). Health literacy encompasses the educational, social and cultural factors that influence an individual’s expectations and preferences surrounding their health care, but also the ways in which these factors interact with the demands of the health care system.

Several factors have caused the issue of health literacy to bubble to the surface in recent years–the aging and evolving racial and ethnic composition of the US population, the passage of the Affordable Care Act which has launched some Americans into the health care system for the first time, and the well-documented effects of low health literacy levels on patient safety. This influx of patients with possible low health literacy levels requires a call to action for addressing this issue both on a practice and policy-based level.

This Expert Panel, taking place the week of 29 September through 3 October, aims to highlight health literacy programs in a range of settings and discuss implementation strategies. To address these important issues, we are pleased to welcome our panelists for this discussion:

     • Tom Bauer, MBA, RT®, HFA, Corporate Director Health Literacy and Patient Engagement at Novant Health
     • Terry C. Davis, PhD., Professor of Medicine and Pediatrics at LSU
     • Lyla Hernandez, MPH, Senior Program Officer at Institute of Medicine
     • Ruth Parker, MD, Professor of Medicine, Pediatrics, and Public Health at Emory University School of Medicine
     • Terri Ann Parnell, DNP, RN Principal & Founder at Health Literacy Partners, LLC
     • Rima E. Rudd, MSPH, ScD, Senior Lecturer at Harvard School of Public Health

Our panelists will offer insight into the following questions:

1. Health literacy efforts can focus on a range of factors, from written and spoken communication, to patient empowerment and social determinants—which elements do you focus on in your work, and what strategies have you tried?

2. What barriers-to-entry exist for patients with low health literacy that may prevent them from seeking and continuing care? How can we identify and measure these in our interactions, practices, and delivery systems?

3. What factors are critical to the success of health literacy programs? What are some of the challenges your team encountered with implementation?

4. Improving health literacy is a collaborative effort that, according to the Joint Commission, requires the input of “providers, health care policymakers, purchasers and payers, regulatory bodies, and health care consumers”, but the resources to fund and man these operations are not always available. How can individual providers or health care professionals implement changes to improve health literacy in their one-on-one patient interactions?

5. What are some of the longer-term impacts of health literacy initiatives in your work—have you seen changes in patient satisfaction, adherence to treatment plans, increased quality/safety scores, lower costs, etc.?

This panel is part of our US Communities Initiative, which is supported by the Agency for Healthcare Research and Quality (AHRQ), and aims to foster discussions between health care professionals on evidence-based practices, and translating these practices across disparate settings, to improve health care delivery in underserved populations in the US.

In an effort to understand the impact of our Expert Panels, we’ve created a short (4 question) survey. Your responses are greatly appreciated—please take the survey survey before the discussion begins: https://www.surveymonkey.com/s/WJY27P3

We look forward to a rich discussion next week—please join the conversation and share your questions or comments for our panelists!

Replies

 

Gonzalo Bacigalupe Replied at 10:21 AM, 22 Sep 2014

Our 2014 book (downloadable) at http://www.salupedia.org/alfabetizacion/ "Alfabetización en salud. De la información a la acción" is a great resource in Spanish, and was a tremendous effort by a group of physicians, public health, psychologists, researchers, etc. on the subject of health. Check it out.

Attached resource:

Rebecca Jurbala Replied at 11:22 AM, 22 Sep 2014

Here are some resources to get started:

Attached resources:
  • Health Literacy Universal Precautions Toolkit & Case Studies (New Cases Added) (external URL)

    Link leads to: http://www.ahrq.gov/literacy

  • Health Literacy as an Essential Component to Achieving Excellent Patient Outcomes (external URL)

    Link leads to: http://www.iom.edu/~/media/Files/Perspectives-Files/2014/Discussion-Papers/BPH-EssentialComponent.pdf

  • “What Did the Doctor Say?:” Improving Health Literacy to Protect Patient Safety (external URL)

    Link leads to: http://www.jointcommission.org/assets/1/18/improving_health_literacy.pdf

  • Promising Practices for Patient-Centered Communication with Vulnerable Populations: Examples from Eight Hospitals (external URL)

    Link leads to: http://www.commonwealthfund.org/Publications/Fund-Reports/2006/Aug/Promising-Practices-for-Patient-Centered-Communication-with-Vulnerable-Populations--Examples-from-Ei.aspx

  • Health Literacy in Nursing: Providing Person-Centered Care (external URL)

    Link leads to:

    Health Literacy in Nursing: Providing Person-Centered Care

    ~ Terri Ann Parnell MA DNP RN (author) More about this product
    List Price: $70.00
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    You Save: $10.50 (15%)

Lawrence Wasserman PhD Replied at 12:34 PM, 22 Sep 2014

Congratulations

I set up center for health education resulting from working at WHO and USPHS.

Served 20 years in Asia and Africa and health prevention is key to needing increasing demand for health care with decreasing health professionals in an age of universal health care.

Am collaborating with MymobileUniversity in Asia where global health, medicine and nursing are just a few education channels. Education for All 2025 is theme EFA2025.

Look forward to learning more of your initiatives and am located in Washington, D.C. Area to meet interested interests.

Anna Meltzer Replied at 3:46 PM, 22 Sep 2014

Thank you for bringing up this discussion.
Health Literacy is a critical step for improving access to healthcare,
safety and quality of services and, especially, advancing an informed
decision-making process by patients.

Sincerely,
Anna Meltzer

Anna Meltzer (Cheltsova), MHSA, CertGH
Healthcare Management and Global Health
LinkedIn: https://www.linkedin.com/in/annameltzer

Lawrence Wasserman PhD Replied at 11:32 PM, 23 Sep 2014

Apology but am not clear as to steps needed to attend live or via webinar or webex etc. these events.

Lawrence Wasserman PhD Replied at 11:34 PM, 23 Sep 2014

Sirs:



Apology for my ignorance but unable to find where I can attend in person or online the initiative?

Brad Snyder Replied at 2:28 AM, 24 Sep 2014

Would this discussion be beneficial for a health team working in Rwanda or is it more US-focused?
Our main goal is developing trainings for local mother, nurses & Community Health Workers.

thank you

Maggie Sullivan Replied at 10:53 AM, 24 Sep 2014

I am thrilled this topic is being raised. It isn't something I remember learning about it nursing school, though having been in practice for 10 years now, there's no denying this enormous elephant in the room. It's vital importance makes me want to do a health literacy assessment on all of my patients (both English and Spanish-speaking), though it's difficult to do in a busy primary care setting. But I fear that without doing this, what my patients actually understand is a fraction of what I hope. I would greatly appreciate any tips for how to assess this in a busy low-resource setting. The other piece I have found in practice is the issue of shame. It's difficult to assess one's literacy without unintentionally causing some degree of shame, especially in a low-literacy population. Because of this, I find patients may overstate their literacy level (and/or English capacity if they are Spanish-speakers). Any discussion and suggestions about this would be helpful.

Rebecca Jurbala Replied at 11:20 AM, 24 Sep 2014

Hi Lawrence, thank you for your question! This virtual Expert Panel will be ongoing throughout the week of September 29th - October 3rd. There's no specific time you need to log on in order to participate, so please free to share questions and comments at any point during the week here on GHDonline: http://www.ghdonline.org/health-literacy/discussion/launching-a-health-litera...

Brad, while the nature of this Expert Panel is primarily U.S. focused, we hope the resources and information our panelists share will also be highly relevant for our colleagues around the world. We hope everyone will also share resources from their own settings as well. We're looking forward to an insightful discussion!

If you haven’t already, please be sure to also take our short, pre-panel survey to help us better understand the impact of our Expert Panels: https://www.surveymonkey.com/s/WJY27P3

Lawrence Wasserman PhD Replied at 6:03 PM, 24 Sep 2014

Thank you Rebecca

Look forward to attending the new initiative

As noted previously many times I proposed initiatives in health education now with technology my initiatives is being realized. For 30 thirty years including those at who treatment was 95% of funding ... Globally. As one person said to me Lawrence treatment you can measure etc. but prevention has no victors to to measure.

ROSANNA COMMISSO Replied at 7:36 PM, 24 Sep 2014

Dear Rebecca

Having worked in the health sector for over 25 years, and in addition being a carer and advocate for my father for whom English is his second language, I've always understood the importance of giving patients the skills to understand the information they are given and how to navigate the health system so that are truly able to give consent.

To address this need, I recently established Health Literacy Outcomes - http://healthliteracyoutcomes.com.au

My goal is to provide education and support to both medical practitioners and patients to increase health literacy rates in Australia and thereby improve patient outcomes. I am currently working with RACGP to provide this training Australia-wide. I am keen to be involved in any Australian initiatives targeting health literacy.

Thank you
Rosanna

Tim France Replied at 8:24 PM, 24 Sep 2014

Looking forward to the discussion next week. thank you for facilitating this.

Broad, substantive health-focused literacy remains essential for health movements to succeed in any of the ways the AIDS response did over the past 30 years. Once again, the entire arsenal of social media platforms and e-learning tools must be used so that affected people and communities can bring their informed voices and demands to the table, and to the virtual space.

I would be interested to hear the panel's views on how we can use such platforms and tools to bridge the gap between the 'experts' and affected people/communities, and what we might do to accelerate that process.

With thanks, Tim

As background to my question, I would like to share a relevant article I published earlier this year:

Attached resource:

Monique Mueller Replied at 10:07 AM, 25 Sep 2014

This topic has certainly piqued my interest as it is an issue that I have dealt with on-and-off for many years. Most recently with relationship to research. Providers are often also researchers or asked to help recruit potential participants into research. Similar to many medical procedures, though with added layers of oversight, potential participants are asked to review and understand the research before joining. The central hub for the information given to the participant throughout the the process is the Informed Consent Form. There is guidance on making informed consent documents at a reading level of 8th grade or less. Yet, it is a struggle to do this for many reasons. Then there is the length of consent forms, which in clinical trials can be quite long - 20-30 pages. The process has adapted to help overcome issues with these long, complicated forms such as powerpoint flip charts distilling the information and assessment tools after review. But do they really need to be that long and complicated? Shorter forms have been developed and studied to be effective, but aren't being created. Why not? If we truly want our participants/clients to understand and not get burned out so they miss critical details, how can we get these forms shorter?

Of note, one quick tool to assess literacy I've used is the Rapid Estimate of Adult Literacy in Medicine—Short Form (REALM-SF) which is found on AHRQ's website

Thanks,
Monique.

Rebecca Jurbala Replied at 10:30 AM, 25 Sep 2014

Hi Monique, thank you for bringing up the issue of lengthy, complicated consent forms and sharing this short form with us.

For those interested in the Rapid Estimate of Adult Literacy in Medicine - Short Form (REALM-SF) that Monique mentioned, the link is attached.

Attached resource:

Julie McKinney Replied at 12:55 PM, 25 Sep 2014

Maggie,

You asked about how to assess health literacy in a busy practice in order to better serve your patients' needs. First, I'll say that testing patients, as you noted, does cause a lot of shame and has been lately regarded as not the best way to approach this. Universal precautions are favored by most health literacy advocates these days. Even highly educated people have been shown to prefer simpler health language. The best tool used to ensure understanding is the Teach-Back method, which is described in the Health Literacy PrecautionsToolkit that Rebecca shared:

AHRQ's Health Literacy Precautions Toolkit
http://www.ahrq.gov/literacy

But there is also a brief three-question screening tool that has been helpful in many practices to identify people with the greatest challenges with less shame than the other screeners:

Brief questions to identify patients with inadequate health literacy
http://www.ncbi.nlm.nih.gov/pubmed/15343421

Jilde Garst Replied at 9:09 AM, 26 Sep 2014

This is indeed a very relevant and interesting topic which deserves more attention.

Working in the field of diabetes, I was wondering if anyone knows of any initiatives in health literacy education specifically targeted at people with diabetes.

I will definitely be following this discussion, Rebecca, thank you!

George Bresnick Replied at 9:40 AM, 26 Sep 2014

In response to Jilde Garst's query regarding health literacy initiatives
for people with diabetes:
We have established a Blindness Prevention from Diabetes Program in Central
Mexico with the local Health Ministry, and we have been trying to deal with
the issue of health literacy regarding the eye complications of the
disease. Although our program has been very successful in achieving
regular retinal evaluations through a telemedicine approach, we have been
less successful getting patients in for laser treatment once those patients
at high risk for vision loss have been identified. We are beginning to deal
with the problem in a systematic way.

There is a website that may be useful for informational brochures and
videos regarding diabetic eye disease.
http://www.nei.nih.gov/nehep/programs/diabeticeyedisease/
NEHEP is a division of the National Eye Institute in Bethesda MD.

I have attached a brief overview of our program in Mexico. I would be
interested in hearing about other people's work in this area.
Sincerely,
George Bresnick, MD, MPA

George Bresnick Replied at 10:30 AM, 26 Sep 2014

Attachment for George Bresnick's reply:

Attached resource:

Dr SWAYAM PRAKASH Replied at 10:35 AM, 26 Sep 2014

I may join the discussion.

Mighty Casey Replied at 1:11 PM, 26 Sep 2014

Dartmouth has a pretty deep bench (Jack Wennberg, Al Mulley, Glyn Elwyn, and more) working on this as part of their informed patient choice and shared decision making programs. Here's the link to the clinician-focused literacy resources, which are also useful for those of us on the "expert patient" bench. We teach at ground level.

Attached resource:

Rima Rudd Replied at 3:47 PM, 26 Sep 2014

I am pleased to add a few more resources to the site.
-The National Call to Action issued in 2010 offers a sense of the scope of actual and potential health literacy activities and key stakeholders. This plan includes attention to healthcare related activities but broadens the scope of activity to include public health and other community based actions.
-The second posting is from an early [2004] book chapter on the health literacy environment and provides some insight into early thinking related to factors that facilitate or inhibit health literacy. A workbook on assessing the environment was posted soon thereafter and several studies followed.
-The third posting, is of a popular 'first impressions' exercise -- conceptualized as an introductory activity, now widely used in the US, in Europe, as well as in Australia and New Zealand. It is posted on my health literacy website [www.hsph.harvard.edu/healthliteracy] but here I post a Spanish Translation undertaken by colleagues in Spain.
I look forward to next week's discussion. Rima Rudd

Attached resources:

Aamer Ikram Replied at 4:48 AM, 27 Sep 2014

Great as ever; its even learning joining the discussions. Waiting

Maggie Sullivan Replied at 3:30 PM, 28 Sep 2014

Thank you so much for the reply and resources. I have already indexed a number of resources I hope to be able to use. And I very much appreciate the idea of applying 'universal precautions' to health literacy. Before having the opportunity to review the resources closely, am I recalling correctly that the average literacy level at which health materials should be aimed is about the 4th grade level? If our patients struggle to read at the 4th grade level, without doing individual assessments, at what level should we aim our materials? I think I'm unfortunately one of the thousands of primary care providers who are under-informed and under-read on the topic, not to mention pressed for time in clinic.

Thomas Bauer Replied at 9:49 AM, 29 Sep 2014

Good Morning. I look forward to this week of sharing best practices and learning n from each other... As a resource I would like to offer the Institute of Medicine's Health Literacy Round Table discussion about implementing health literacy best practices in organizations. http://www.iom.edu/Activities/PublicHealth/HealthLiteracy/2013-APR-11/Video/B...

Thomas Bauer Replied at 10:17 AM, 29 Sep 2014

Good Morning Maggie, You raise a good question... I have found that the patient education we writein our system average between a 6th -8th grade levels. The required use of medical terminology raises the level higher than I would prefer. However, when applying the principles of health literacy I explain the term. I have found the attached link to be helpful in educating my team... These principles are true in all forms of communication. http://www.mainehealth.org/workfiles/MH_LRC/MH_Print%20Guidelines_Intranet.pdf

Terri Ann Parnell Replied at 10:56 AM, 29 Sep 2014

Good morning and welcome to this online panel discussion! I am one of the panelist and am delighted to be participating. I was asked to provide a brief background about myself. I am a nurse & author of Health Literacy in Nursing-Providing Person-Centered Care. My previous experience has included cardio-thoracic critical care, staff and patient education, nursing management, faculty, nursing leadership and hospital administrator across a large health care system. I am currently Principal and Founder of Health Literacy Partners, LLC. I am very excited to participate with 5 other exceptional panelists with immense experience in health literacy!

In response to posts by Maggie and Julie, I agree that a "Universal Precaution" approach is extremely helpful in addressing health literacy in the health care setting. It also helps to eliminate the stigma and shame that may occur with testing of health care consumers. Implementing a universal precaution approach, asking about preferred language to discuss and receive health information, speaking and providing written materials in plain language, incorporating teach-back and asking "What questions do you have?" rather than "Do you have any questions?" are all strategies that can foster dignity and respect, create a shame-free environment, and enhance effective communication.

I look forward to the conversation and learning from all!

ruth parker Replied at 3:39 PM, 29 Sep 2014

I am Ruth Parker, another panelist and also want to introduce myself. I have worked as a clinician-educator faculty member for Emory University in an urban public hospital setting for 25 years. For about 2 decades I've been thinking about, researching, teaching and more recently advancing health policies to promote a health literate nation. Every interaction we have in the healthcare setting should be primed with our desire to come to common "meaning/understanding" with everyone seeking and getting care there. In addition, broader public and population health efforts should fundamentally recognize the shared goal of mutual understanding by those seeking and those providing health and healthcare. Ideally, we all want to reflect the shared goal that all people understand what they need to know and do for health. No doubt this sounds lofty and idealistic, but that goal has guided my own efforts for years...and continues to do so. I look forward to the conversation this week, and appreciate the opportunity to be a part of it.

Cindy Brach Replied at 3:56 PM, 29 Sep 2014

Just a note on reading levels. The average adult in the U.S. reads at the 8th grade level. That means that HALF of adults read below that level. And what you are able to read and assimilate at the best of times is not the same as when you are sick, frightened, or stressed. For this reason, never rely on people to read materials you give them. If it's important, you need to go over it with them and check that they understood. For example, one of the tools in AHRQ's Health LIteracy Universal Precautions Toolkit (www.ahrq.gov/literacy) is Tool 12: Use Health Education Materials Effectively.

I also endorse the teach-back method (Tool 5 in the AHRQ's Health LIteracy Universal Precautions Toolkit). There is a free online training course called Always Use Teach-Back, available at: www.teachbacktraining.org/. The URL may change shortly, but I believe it will still be available so you can google it. Many of the training materials is available on the Institute for Healthcare Improvement's site at http://www.ihi.org/resources/Pages/Tools/AlwaysUseTeachBack!.aspx.

Rima Rudd Replied at 4:11 PM, 29 Sep 2014

Good day,
I want to support the voices calling for 'Universal Precautions' in talk and in writing as well as the call for dignity and respect noted by Terri Parnell.

In addition, unless we are undertaking a research study, we should avoid 'testing' patients' skills. I believe that this is part of what Terri calls for in a dignified exchange. Instead, we should comfortably draw from available national data. Each wave of assessments of adult literacy skills [1992, 2003, 2012] has found that on average, at least half of US adults have limited literacy and numeracy skills. Most adults have difficulty using the printed word to accomplish everyday tasks with accuracy and consistency. We can take it for granted that most adults would have difficulty with complex texts and esoteric words found in most health and medical discussions and materials. Of course, there is evidence to support this as well. This means that we have to focus on the match or mismatch between existing skills and the way we have been providing important health information.

In a side note ... I point out that educators and literacy experts insist that we cannot measure literacy skills of individuals unless we simultaneously measure the literacy demand -- such as the complexity of the text or the clarity of the speaker. Unfortunately, for many health studies, we have not measured both 'sides of the coin'.

Many people do engage in reading level assessments. My colleagues and I have found that a reading grade level [for writing and for talk] is not very helpful. After all, reading grade formulas are only based on length of words. The more rigorous formulas {such as SMOG] include length of sentences as well. However, none of them capture jargon or difficult conceptual terms [such as risk or normal or average]. But we can learn something about difficult text from them:
- Long words in English tend to have silent letters in them [not true for Spanish or Italian where almost every letter is sounded]. This is why formulas count syllables and this is why such formulas are not suited to all languages.
-Long sentences [in any language] tend to contain multiple ideas, often contain distracting information, and frequently contain clauses or asides -- causing a reader or listener to lose the main idea and get a bit lost.
These formulas only offer a start in the assessment process.

How do we improve our communication? There are many tools available and several people have already posted some of the rich resources available [see the most recent tools posted on AHRQ and on the CDC websites]. They all point to the need to be attentive to words, organization, tone and voice and to be very clear about the purpose/focus and the needed action/follow-up.
Rima Rudd

Lyla Hernandez Replied at 4:14 PM, 29 Sep 2014

I am Lyla Hernandez, Director of the Institute of Medicine Roundtable on Health Literacy for the past 7 years. During that time I have had the opportunity to work with many wonderful experts in the field, including those on this panel. It will be great to share ideas and resources over this coming week. I am eagerly looking forward to the discussion and the opportunity to interact with all of you.

Marie Connelly Replied at 5:51 PM, 29 Sep 2014

Many thanks to all for sharing such incredible resources in our discussion so far, and a warm welcome to our panelists—we're thrilled to be able to learn from your deep expertise this week.

While we're discussing reading comprehension and Universal Precautions we can take to improve the readability of our written communications, I wonder what can also be done to reinforce these principles in verbal communication as well. A recent experience as a patient left me surprised by the number of times I uttered the phrase, "I don't know what that means." At the end of my visit, I left the hospital with an easy-to-read summary of what occurred, whom to follow up with, etc. It was a profound relief after the confusion of a day in the ED, but it also left me wondering why similar efforts seemingly hadn't been taken to make those real-time, face-to-face interactions easier to understand.

Recognizing that there are many tools and approaches for improving health literacy and most practices and systems are likely to implement a few at a time, I'm curious to hear from panelists how we can lay the groundwork during these implementation phases to develop a more pervasive culture of health literacy in care delivery settings.

Terry Davis Replied at 5:58 PM, 29 Sep 2014

I am Terry Davis, another panelist on this cool discussion/HL blog. I am a psychologist by training but "fell into” the problems associated with understanding health information while working with patients at Louisiana State University Health Sciences Center (a health care system that cares for low income people). For the last 25 years I have been working with patients and providers in efforts to make health information and services more user - friendly.
One of the things I love about the field of HL is that the clinicians, researchers and public health professionals involved are committed to working with people to improve health and healthcare. We are also a very collaborative group.
My original research was measuring the problem. I developed the REALM and REALM -TEEN. Now I am focused on making health information and tasks easier. I am very interested in effective ways to help people improve their health behavior – which is easier said than done. I am working on national teams creating and testing self- management guides for patients with chronic diseases like diabetes, heart disease, COPD, RA and for people wanting to lose weight. I am also working with research teams to improve labels on Rx and OTC drugs and to improve cancer screening in rural clinics.
I love hearing what people are saying on this blog – a communication technique new to me. I am feeling rather “hip”

Terry Davis Replied at 6:10 PM, 29 Sep 2014

Hi Jilde
Thanks for asking about DM materials. i worked with a the American College of Physicians and a national group of physicians nurses, dieticians and patients in creating a self-management guide for patients and a brief counseling framework for providers or clinic staff. Over 5 million of these have been distributed by ACP. They are available in English and Spanish. The guides are colorful, easy to read (5th grade level) have lots of pictures of real people with DM -also there is NO math :)
We have done studies in several clinic settings and found the guidebooks and counseling framework is effective .
I will happily write more if you are interested.
Terry Davis

Thomas Bauer Replied at 6:31 PM, 29 Sep 2014

Hi Jilde, You ask a wonderful question... This is an area I am actively researching. I believe there are many issues that impact patient education for our patients with diabetes... I firmly believe we need to teach survival skills first and build in small chunks of information to this base knowledge set. While this seems logical I find that acute care educators feel the need to provide a full curriculum of knowledge prior to discharge... This is then followed up upon in the ambulatory setting...If diagnosed in the ambulatory setting classes are frequently intense and have financial barriers and time barriers. . Given these statements I am researching the following:

1. Nomenclature needs to be standardized.... for example if one clinician uses A1c and another HA1c. is this the same measure or two?
2. A system approach to education needs to be built in module format supported by Teach Back after each "chunk"
3. Education needs to be provided in the learner’s preferred learning style... 40% of all learners are visual or tactile... Our profession educates primarily in oral in written methods. One such tool is the Krames/ADA/Merck Go to Guide for Diabetes E-book that has voice and embedded videos. www.ada-ksw.com
4. Education needs to be provided when, where and how the patient prefers...

I am actively beginning my research and will gladly share results as they are available, I hope this helps

Thomas Bauer Replied at 6:42 PM, 29 Sep 2014

Monique, I am fortunate to have a strong partnership with my legal team at Novant Health. Together we have applied the basic principles of health literacy to revise the general consent and all admission patient facing forms. My partner simplified all of the legal ease and I simplified the medical terminology... We were able to reduce the admission packet by about 50% and improve readability from college graduate levels to 8th grade. I had the good fortune of working with local hospitals in simplifying advance directives. (attached).. Our next task is the specific informed consents.... In the interim: the best method to assure informed consent remains Teach Back in my opinion...

Attached resource:

Thomas Bauer Replied at 7:03 PM, 29 Sep 2014

Marie, I believe building a culture of health literacy is no easy task... I had the privilege of presenting at the IOM Health literacy Round Table with seven other systems about best practicing in implementing health literacy best practices.. During the conference we learned while we had all achieved some measure of success it was a journey in progress.

Like other researchers in our field I believe the number one issue is awareness that the problem exists in MY practices.... It is easy to acknowledge others have opportunities... but to admit that I personally have not communicated effectively is a tough pill to swallow... I believe the propellant to hardwiring low health literacy is awareness we all have opportunities to improve and yes we (while being healthcare professionals) also have at times issues understanding the complexity of healthcare. I always begin my presentations by asking... “who in the room is the healthcare expert in their family” Everyone raises their hands... I then ask do you ever get calls in which you know the person is totally confused? Stories follow.... so then I say.... so it is Mom, Dad, brother’s sisters and friends.... everyone including us...

Second I think it is important to understand the impact of low health literacy globally and on their practice... Globally my favorite quote is Nothing, not age, income, employment status, educational level and race or ethnic group affects health status more than literacy skills. From a practice point of view I discuss re-admissions, return ED and clinic visits and a study that found in five staff member practice, one person spends there fill week answering question to clarify the clinical encounter.... At Novant Health we learned we can reduce those call backs significantly using teach back...

I then follow-up with a real clinical story ... This Head-Heart-Head approach to building awareness has helped me and our health literacy champions lead this change... without these champions we would not have had the impact we have had.

Elizabeth Glaser Replied at 8:15 PM, 29 Sep 2014

Hi
I am really glad that GHDonline is talking about this but I am trying to understand if health literacy falls under health communication or is it really something distinct?
Besides providing materials, it is vital to read body language and other non verbal responses to gauge a patient's understanding of their health and treatment. Giving the person an opportunity to periodically provide a self report on their current diagnosis, medications and treatment options, can allow us to understand a person's changing literacy level and fill in the gaps.

A final comment - this panel seems geared for domestic health but health literacy and communication is important in many contexts.In the current Ebola crisis, clinicians and public health officials are grappling with a situation where information to the public must be clear , simple, and not contribute to a climate of fear and misunderstanding. It seem that UNICEF and others have done some health education to develop materials for humanitarian emergencies, but has anything similar been done for the US?

I am adding a file here with a UNICEF poster on Ebola that seems to be gauged to those with low overall reading skills.

Attached resource:

Rima Rudd Replied at 9:15 PM, 29 Sep 2014

I respond to Elizabeth's query about the relationship between health literacy and health communication. I do think that there is a very important overlap and that health literacy is a component of health communication. At the same time, health literacy should also be considered a component of health education, health promotion, occupational health, and environmental health. These fields of study had not previously explored the relationship between literacy and health outcomes and the critical importance of the match between population skills and professional communication.
Several analyses have been conducted of communication in times of crises - through a health literacy lens. Some efforts were poor -- such as the US response to health needs and health information during Katrina and after the mailing of anthrax. This poster Elizabeth offers is an enlightened example but other available communication efforts have been and remain sadly scientifically correct but incomprehensible to the average audience.
Rima Rudd

Terri Ann Parnell Replied at 10:04 PM, 29 Sep 2014

Marie,
Building an organizational "culture of health literacy" takes time and is an ongoing process. In my previous experiences, I found that having senior leadership support and buy-in is crucial. It assists in communicating a clear, consistent message across the organization and shows commitment. It also assists in helping to measure your efforts as metrics related to health literacy initiatives can be included in the organizational dashboard. In addition, having senior leadership support may help with obtaining necessary resources for your health literacy journey.

Another very helpful way to begin to integrate health literacy throughout the culture of your organization is to have representatives from every department or division involved in health literacy initiatives. Include depts such as finance, public relations, marketing, legal, admitting, clinical information systems or IT, volunteers, engineering, etc. and not just the nursing or direct patient care departments. This assists with integrating health literacy throughout the entire health care "system" or environment. The health literacy message needs to be relevant to each area so that they "get it" but once they do you will have many health literacy chamipions to assist with integration and sustainability. Tackle the "low hanging fruit" first, obtain small successes and continue to build from there.

Develop a strong foundation by doing an assessment, raising awareness and then provide education to all staff and employees. Also raise awareness and educate the health care consumers and communities being served. Personally I feel it's important to build partnerships and trust, educate both consumers or patients receiving health care and the professionals and staff providing the care in an effort to close the gap that exist.

A very useful resource in developing your strategic plan to enhnace the organizational culture is the IOM's paper - Attributes of a Health Literate Organization.

This is just the start, but I hope it provides some prelimary suggestions and direction! Terri

Rima Rudd Replied at 8:58 AM, 30 Sep 2014

I have been enjoying the conversations and the many contributions from different perspectives.
The second of the two Tuesday questions have long been interests of mine, as I wrote in my profile introduction. In the mid 1990s I worked closely with colleagues in adult education and with my own students in a public health graduate course to conduct ‘tours’ and walking interviews within public health, social service, and healthcare organizations. Our purpose was to identify literacy related barriers. We developed and piloted tools for environmental assessments and suggested mechanisms for bringing about change [posted on line at www.hsph.harvard.edu/healthliteracy].
The question is also very timely. For example, we, in the US, are in the midst of trying to expand access to care. We have, over the course of this year, witnessed many of the political, conceptual, and computational barriers facing people as they seek the insurance needed for ‘entry’. The processes have been made unnecessarily complex and terribly cumbersome.
But the notion of a ‘health literacy environment’ is taking hold, thanks to the recent IOM Health Literacy Roundtable’s proposal that we consider institutional attributes. Many researchers and practitioners within the US and in Europe are currently exploring how different organizational factors facilitate or inhibit access to health information, health care, and health services. The challenges ahead require us to become aware of these factors and develop change strategies, measures, as well as processes for monitoring and analyzing change efforts.
Terri Parnell, in her posting late last evening, offers wonderful insight about where and how to begin to establish a culture of health literacy in a healthcare organization. We need to identify similar processes for public health and social service organizations.
For the first of the Tuesday questions… I remind us of social factors. Analyses of population health literacy skills have been conducted in many countries [for example, Canada, Australia, the Netherlands, New Zealand, US]. Compared to people with stronger skills, those with low health literacy skills are more likely to be living in poverty, have limited access to resources, and have minority rather than majority status within their country. And so, I believe that we must more squarely address issues related to these social factors of resources and power -- linked to entry and efficacy and action.
Rima Rudd

Attached resource:

Cindy Brach Replied at 9:00 AM, 30 Sep 2014

Following up on Terri's reference to the IOM discussion paper "Ten Attributes of Health Literate Health Care Organizations," here's the URL: http://iom.edu/~/media/Files/Perspectives-Files/2012/Discussion-Papers/BPH_Te...

Also, in response to Elizabeth's comment about international contexts, I know that Cynthia Baur, Senior Health Literacy Advisor at the CDC, has been called in to work on the CDC's Ebola communications. I think the principles of clear communication apply whether you're looking domestically or internationally. The imperative to be cultural compent also exists in both settings.

In response to Marie's post, I think most of us have faced situations where we didn't understand what we were being told by health care professional. I wrote up one of my personal stories on that front. The article, "A daughter's frustrations with the dearth of patient- and family-centered care" can be accessed at: http://pxjournal.org/journal/vol1/iss1/7/. I think Marie's story is unusual in that her discharge instructions were clear and easy to read. At the IOM's Roundtable on Health Literacy held a workshop last March, "Implications of Health Literacy for Discharge Instructions," speakers made it clear that most hospitals' discharge instructions are not patient-friendly. You can access the presentations from and video of that workshop at: http://www.iom.edu/Activities/PublicHealth/HealthLiteracy/2014-MAR-17.aspx

I happen to be working on a project now that addresses part of Marie's question on improving real-time interactions at the hospital. We (my contractors at Abt Associates and The Joint Commission and I) have developed two training modules, one for hospital leaders and another for health care professionals, aimed at improving the informed consent process. We present strategies such as using health literacy universal precautions, obtaining language assistance, using high quality decision aids and teach-back, and presenting all of the options, their benefits, harms, and risks and helping patients make decisions corcordant with their goals and values. We'll be piloting the courses at four hospitals early next year. Obviously these courses alone are not going to move the needle, but can be part of the effort to help health care professionals be good communicators. Afterall, health health care professionals want to be understood, but may need help with effective and efficient communication.

Finally, I realize I didn't introduce myself when I first posted to this discussion. I work at the Agency for Healthcare Research and Quality (part of the U.S. Department of Health and Human Services), where I lead health literacy and cultural competence activities.

Cindy Brach Replied at 9:10 AM, 30 Sep 2014

Oops, I forgot to mention some sources of models for clear discharge instructions. The Re-engineered Discharge (RED) Toolkit has models of what is called the After Hospital Discharge Plan (aka discharge instructions). AHRQ has created a fillable PDF that resembles the After Hospital Care Plan that patients and families can use themselves. The RED Toolkit can be found at: http://www.ahrq.gov/professionals/systems/hospital/red/toolkit/index.html. The sample After Hospital Care Plan is available as a PDF in Egnlish (http://www.ahrq.gov/professionals/systems/hospital/red/toolkit/ahcpsample.pdf) and Spanish (http://www.ahrq.gov/professionals/systems/hospital/red/toolkit/ahcptemplen.pdf) and as a Word document. The fillable PDF, "Taking Care of Myself: A Guide for When I Leave the Hospital" can be downloaded from: http://www.ahrq.gov/patients-consumers/diagnosis-treatment/hospitals-clinics/....

Julie McKinney Replied at 1:07 PM, 30 Sep 2014

Marie and others,

Here are some more resources for creating a culture of health literacy in your organization. As everyone has agreed, it's so important to find champions, get high-level buy-in, and infuse awareness and new skills across all departments. I've added links to some good tools to help with the nitty-gritty of these tasks.

Also, as Rima said, it is important to work on improving health literacy from both sides. In other words, we have to reach both health care providers and public health educators AND consumers or community members. I have found that adult literacy programs can be good places to partner with in order to reach community members most at risk of health literacy challenges. By partnering with these agencies, you can find a number of ways to create educational opportunities for your local community. Read some short articles about examples of these partnerships in the Focus on Basics issue, below.

Attached resources:

Julie McKinney Replied at 1:34 PM, 30 Sep 2014

Health Literacy as a Two-Sided Street:

Terri also mentioned how important it is to reach and educate both the givers and receivers of health information. We know that adults in the U.S. need to improve their literacy and health literacy skills overall; and we know that health providers and educators need to improve their skills in providing instructions and information that is easy to understand and act on.

It seems to me that health literacy efforts gone through phases that swing more heavily to one side or the other. Of course what we need is a balance: a vision of building the bridge from each side to meet in the middle.

Not many definitions of health literacy frame it in this two-sided way, except for the Calgary Charter on Health Literacy, attached here. This may help to answer your question, Elizabeth, about the definition. I find it easier to wrap one's mind around the concept of health literacy being these simple five steps: 1. finding health information, 2. understanding it, 3. evaluating it, 4. communicating about it and 5. using it to improve health. For consumers it means being able to do all these steps, and for the systems it means lowering the barriers and helping their communities to do these five steps more effectively.

Here are two excerpts from the Calgary Charter:

"HEALTH LITERACY DEFINED:
• Health literacy allows the public and personnel working in all health-related contexts
to find, understand, evaluate, communicate, and use information.
• Health literacy is the use of a wide range of skills that improve the ability of people to
act on information in order to live healthier lives.
• These skills include reading, writing, listening, speaking, numeracy, and critical analysis,
as well as communication and interaction skills."

"The health literacy of a society can be improved both by developing the skills of
individuals and by lowering the barriers created by health service personnel and systems.
Prior definitions have largely identified health literacy as relating to the patient, and have
under-emphasized the role of health system personnel. One of the goals of a health
literate society is to have a more equal power relationship between those who work in
the health system and those who use it."

Attached resource:

Terri Ann Parnell Replied at 5:12 PM, 30 Sep 2014

Julie and all,

Thank you for your wonderful health literacy vision of building a bridge from one side (consumers) to the other (providers) so that the both sides meet in the middle and for sharing the definition from the Calgary Charter on Health Literacy. It is a collaborative definition which I also like, however, I personally feel we are still struggling to define health literacy in a way that addresses the breadth and depth or complexity of health literacy.

I tend to visualize health literacy more as a tapestry - that resembles a rich and often complex life experience that is multi-dimensional, with interwoven behaviors and life experiences (“threads” and “fibers”) that impact upon both the consumer and the health care system or provider. It includes the cultural and social factors that Rima Rudd referred to in her earlier post. The complex skills associated with health literacy can be cultivated, enhanced or even diminish over time.

I personally feel that other important components in health literacy are the many misconceptions that exist along with unconscious bias from both the giver and receiver. I describe this vision of health literacy along with a visual model in more detail in my book listed in the resources.

Thank you all for this stimulating “discussion" and for sharing such wonderful resources. Looking forward to continuing the conversation! Terri

Didier Demassosso Replied at 8:31 AM, 1 Oct 2014

Congratulations for this initiative,

When I started volunteering for The HealthCare Information for All by
2015 (http://www.hifa2015.org) I never knew anything about health
literacy and health education. As a HIFA Representative I have to talk
to people about the HIFA but talking about Health or Healthcare
requires access to health information. The HIFA made the basis for a
powerful interest in health information which added to by research
skills enabled me to learn as many things as I could on Health. In the
HIFA discussions I really learned a lot of things. I continue to
learn. It is a powerful health data base on its own. It is important
to say that health information be it as a service or a research area
is very [very] new in Cameroon.Yet to access the need of health
literacy and health education I listen to the radio ,the TV and walk
in the streets. What people know is insufficient to improve on their
wellbeing. Many people need to access the right health information and
be made to understand the need for evidence based treatment, medecine
and community involvement in health developement. This is not saying
that traditional therapies or health practicies are all noxious.
According to the World Health Organisation traditional medecine is by
far the one used by Africans and they have been using it for
centuries. I believe there are new challenges (e.g environmental and
climatic changes, destructuration of the family and community as a
result of war, conflcts) which (will) hamper the suistainablity of
traditional medecine albeit paradoxically its positive effects on the
environment.Notwithstanding, people really want to know more about
their health and health professionals are also in the need to be
refreshed. Talking with different health professionals has enabled me
to know that the interest in health issues is manifest. Recently , I
was amazed to know that my junior sister gradually mastered clinical
reasoning as a result of her watching the series Dr House. The
implications of this experiential knowlegde are endless. I keep
talking about the HIFA to all I meet because it is important to be
health literate. People have and need to know more about health
literacy.I believe your initiative is more than welcome in Cameroon.

Terri Ann Parnell Replied at 8:47 AM, 1 Oct 2014

Good morning,

Marie has asked the panel to respond to the question for today, “What are some challenges your team encountered with implementation of health literacy programs?” My experience is primarily from a hospital/health care system perspective and I have encountered several themes:
• Most health care professionals truly feel they are already communicating effectively. They have shared that they “even ask their patients if they have questions” before ending the visit and that they most often they respond that they don’t have any questions. This provides reinforcement that they feel they did a good job.
o My response is to try to implement one or two of the health literacy strategies we have discussed. I suggest that they begin the next day, with the first one or two patient’s of the day and see if they receive a different response.

• Another theme I have experienced is that many clinicians do not feel they have the time to incorporate teach-back into their already very busy day.
o I empathize with how busy all health care professionals are, and explain that it may in fact take a little more time in the beginning but it is important to enhance patient safety. Once we discuss patient safety and they are more aware of the implications they are often more eager to give it a try.

• Lastly, I feel that often times because health literacy is everyone’s concern – not only the nurse or physician, no discipline or department takes primary responsibility and accountability and that can translate into the assumption that “someone else is doing it or taking care of it”.
o It is a team approach – in the health care setting it applies to everyone – the nurse, physician, registrar, volunteer, concierge, social worker, discharge planner, transporter, health coach, etc. Raising awareness and educating all staff is an important aspect of changing the culture of the organization. When possible, having a dedicated health literacy leader or role in the organization with defined responsibilities and scope of work can be of great benefit in sustainability of health literacy initiatives.

Would love to hear if others have had similar experiences...Terri

Thomas Bauer Replied at 9:49 AM, 1 Oct 2014

Terri, My experience is exactly the same as yours as we deployed a foundation of health literacy practices across our system...I found that once I defined low health literacy it was beneficial to ask "How does this affect your practice?" After a typically awkward pause the impact is revealed and it becomes clear that health literacy is an opportunity. Like you I ask them to try one thing.... on one person a day. I typically recommend Teach Back.... I tell then it will feel awkward for a while, but as they gradually use it ; it will become second nature and in time save them time.... Does this work every time? No, but it begins the process of awareness.

I look forward to hearing everyone’s successes and lessons learned ... Tom

Thomas Bauer Replied at 9:57 AM, 1 Oct 2014

I believe the other challenge we face in addressing health literacy is an ever increasing number of competing priorities... However, when the demands expected of healthcare are simplified to the IHI Triple AIM (cost, population health and patient satisfaction) it becomes clear that addressing health literacy is an essential foundational element to achieving the triple AIM

Rima Rudd Replied at 10:12 AM, 1 Oct 2014

Once again, I am delighted to add reflections in response to Terri's wonderful lead. My work in public health has taken me to a variety of 'practice sites' - including national and regional departments of public health, adult education programs, and hospitals here in the US as well as in Canada, Europe, Australia, and New Zealand. Many of the same themes noted by Terri have been repeated in my experiences:
Comfort: Comfort in 'our' ability to communicate with an initial focus on the 'hard to reach' - with questions such as why are they so hard to reach???
Ego is involved in writing and in speaking [don’t we all love our well crafted sentences?]. People need to experience the discord and safely reflect and experiment. I found that the teach-back technique works as a wonderful experiment. People return from an assignment with real insight: ok, too many people did not get the main message. It may not be them! I think I have to re-shape what I say.
- Time constraints: The cry is echoed in all practice sites: if only we had more time on task, with clients, with patients.
I have witnessed those in public health cite funding restrictions although they are aware of the importance of formative research in shaping and piloting messages and materials. I have worked with many health professionals in medicine, nursing, dentistry who are very aware of the importance of clear communication. They too cite time limits on visits and lack of funds for time spent for patient/family education. In both cases – harried professionals are correct in seeing limitations for what they can do without profound organizational change. We need to address the larger systemic issues that shape our institutional culture and that constrain our hard working professionals.
And I add another to Terri’s list: respect. I know that this will seem strange but… We don’t seem to have the same level of respect for communication that we do for substantive products [such as pills] or hands on procedures [such as surgery].
Although directions can have life and death consequences, we don’t regularly insist on the application of well-known and well-tested rigorous procedures: identification of perceived and felt needs, engagement of members of the intended audience in the development and design phases, testing of ideas and concepts, assessments of drafts, rigorous piloting testing and revision…. all the components of formative research.
Rima

Attached resource:

Julie McKinney Replied at 10:21 AM, 1 Oct 2014

I heard Cliff Coleman recount a great tip. (Of course it helps that he is a doctor himself.)

When he talks with doctors about making some changes, or even joining a health literacy task force, they often say "I can't afford the time..." So he asks them "Why did you become a doctor?" As they answer, it usually becomes clear that they got into medicine to help people, and pretty soon Cliff is able to say "Well then how can you afford NOT to take the time?"

James Van Camp Replied at 11:03 AM, 1 Oct 2014

I found the book "Effective Health Risk Messages" to be an informative resource for crafting marketing messages as part of a strategic marketing plan. It is meant to be a Step-by-Step Guide, and I was able to develop risk assessment models as well as sales and marketing training and communication tools that resulted in a new business unit for our company. One of the offerings was for secondary disinfection of potable water systems in healthcare and other public facilities. Granted this is only feasible where modern water treatment systems are already in place, but the science informs us about "best-case scenarios" that may be translated into worst-case ones. What we always face in these situations is not only "Health Literacy" but "Health Action".

Here's the link to the book publisher's site.

http://www.sagepub.com/booksProdDesc.nav?prodId=Book10703

Attached resource:

Terry-Lee Marttinen Replied at 11:42 AM, 1 Oct 2014

Hello,

I am student researching the history of race in genomics and psychiatry. I visited this link and noticed the term "racial" is used in your introduction. Race is increasingly understood as an invalid category to denote geographical populations. Is it possible to use alternative language in program descriptions?

Also, a pdf file for insightful discussion on health literacy in Canadian Aboriginal context can be found at: http://journal.cpha.ca/index.php/cjph/article/viewFile/1522/1711

ALCIBIADES BATISTA GONZALEZ Replied at 11:55 AM, 1 Oct 2014

Hi,
I apologize for my English, however I will try to introduce some ideas about this topic. When we talk about health literacy, from both perspectives: the personal or the collective (families, communities) points of view; there is a factor that we have to emphasize, because it underpinning the whole communication process. This factor is our ability to hear the others.

When we try to change practices and life styles of persons, families, or even communities; then we take the "teacher's approach": deliver advice and information, but much of the time, without a broad understanding of the social and cultural determinants of the problems.

It will take time, but when we hear the people, we learn and understand the origin of causes, and the people too, at the same time. I consider this process more like a collaborative construction process. It is not a debate. It's a process of deliberation that takes into account the values ​​of the people. As healthcare workers, we should assume the role of facilitators in this collaborative construction process.

Alcibiades

ruth parker Replied at 1:34 PM, 1 Oct 2014

I appreciate your comment Alcibiades and agree with you. I believe “listening” to be the hardest part of communicating…and indeed it requires intention, action, and skill. When the IOM Health Literacy Report was released a decade ago, Harvey Fineberg (who led the IOM at the time) noted that there is probably nothing more patient centered than health literacy. It begins with the patient and ends with the patient.

Terri Ann Parnell Replied at 1:46 PM, 1 Oct 2014

Thomas, Rima, Julie, & Alcibiades,

Thomas, I agree that competing priorities is a definite challenge and your suggestion of aligning with the Triple Aim is a wonderful approach to obtaining buy in.

Despite health literacy being a cross cutting priority in prevention, illness and wellness, I appreciate and agree with Rima’s comment that “We don’t seem to have the same level of respect for communication that we do for substantive products [such as pills] or hands on procedures [such as surgery].” It seems that on one hand, communication is viewed as an “easy” task yet in reality it is really “hard” to communicate effectively.

Julie’s tip from Cliff Coleman is a great suggestion. I have found that some physicians (although certainly not all) seem to value the health literacy message a bit more when it is presented to them from another physician colleague.

Alcibiades thoughts on the cultural and social determinants are of great importance. I would also like to add linguistically appropriate communication. The number of limited English proficient (LEP) individuals in the U.S. grew by 80% from 1990 to 2010 and close to 60% of hospitals treat LEP patients daily. Although many patients may be multilingual, we must ask what is their “preferred language” to discuss health care.

Alcibiades comment that we need to truly “hear the people” and listen reminds me of a favorite quote by Rachel Naomi Remen, MD –
“I suspect that the most basic and powerful way to connect to another person is to listen. Just listen…when people are talking, there is no need to do anything but receive them.”

And, I almost forgot…“Happy Health Literacy Month” to all! Terri

Clemens Hong Replied at 2:37 PM, 1 Oct 2014

Thank you for this terrific discussion. There has been a rich discussion of approaches to address this important issue. One thing that I would like to hear more about is how you all are engaging patients in the development and delivery of interventions to narrow the gap between patients and healthcare providers. After all, those who are closest to the problem are closest to the solution. How do we engage patients in helping us develop solutions, and what role can individuals who are closer to the problem (e.g. family members, health coaches, medical assistants, community health workers, family members, etc) play in improving the way we delivery care?

Terry Davis Replied at 3:26 PM, 1 Oct 2014

Clemens
Great question about strategies to involve patients in developing and delivering interventions. The HL guided interventions I have developed - whether strategies to improve colon cancer screening in rural clinics, developing materials and counseling frameworks to help modify health behavior to improve chronic disease or creating user friendly Rx drug leaflets and labels have included patients, providers and topic experts.
I start by reading the literature. I want to know what has been done, what is working or not working. Then I listen to patients and providers from a variety of places and healthcare settings. I team up with a co -leader to do individual and interviews and small group’s sessions. (If possible l brings food and pays a stipends for their time) I begin by getting to know them a little- establish rapport and then asking open ended questions about topic I am interested in. I want to elicit their perspective, to hear their voice, I want to know what challenges they have had and what they think would work better. One of my favorite questions is “if you were queen how you …organize this, communicate this etc. I also love to also talk w family members. I enlist these patents and family in helping create the strategy/plan/materials etc. I ask if I can come back when I have more details and get their help again.
I do a similar process with providers asking what it is like for them – getting their perspective and challenges and ideas for improvement. Then I work w a multi-disciplinary team (ideally from several places) to incorporate the information in developing and implementing the intervention. Then I go back to patients and providers – some the same and some new ones to fine tune. This is an iterative process- with several “back and worth’s”. We must make sure the strategies are acceptable and practical - that they are clear, achievable and that they “land” right with the target groups.
I have learned patients, family members and providers love to be included and asked what they think and their ideas for improvement. They are always appreciative of seeing their input in the “next draft” of a plan project or material and being asked for further suggestion to improve.
I do not see myself as the expert but the coach – who brings the appropriate team together and encourages them to create a good game plan.
I also want to work w a team of health services researchers to test interventions out to see they make a difference and ideally are cost effective and sustainable
Hope this helps. Have fun. I always learn something when I listen to pts and providers. Plus it nice to connect with them in this way.

Thomas Bauer Replied at 4:13 PM, 1 Oct 2014

Friends, I agree listening is essential to health literacy... I love using George Bernard Shaw’s quote. “The single biggest problem with communication is the illusion that it has taken place” ... I follow this quote with a listening exercise in which I break the group into small groups and ask one person to describe a picture and the listener to draw it.... It is eye opening and makes this point so very clear.

We have worked hard to encourage our patients to ask questions... We have posters and PSA's playing on the TV’s in our medical practices and hospitals encouraging the use of Ask Me 3... As you know the Ask Me 3 technique encourages patients to ask “What is my Main Problem" What do I need to do about it" and "Why is it important for me to do this.” When we encouraged patient to ask these question we achieved limited success. This was also the case in a large study that was published AAFP several years ago

We then converted “Ask Me 3” into "Tell Me 3" to use as the framework for clinical discussions. By leveraging these essential questions we engage our patients in a conversation and are able to identify barriers to completing the treatment plan. When combined with Teach back we saw significant decreases in re-admissions and improvements in patient satisfaction

Terri Ann Parnell Replied at 8:03 AM, 2 Oct 2014

Clemens,
I agree with your comment and feel engaging “those closest to the problem” is of vital importance for a successful and sustainable solution.

For select initiatives, I have collaborated with members of the community that were volunteers on a patient and family advisory committee. I began by meeting with the chair of the committee, attended a few meetings to get to know them and so they could get to know me. I then gave an informal overview of health literacy, the importance of effective communication and the implications to patient safety and outcomes. The chair and I then asked for volunteers to participate in the project and explained the proposed process based on previous projects and asked for their thoughts on how they felt this would work. We then changed the process slightly based on their suggestions and began. As Terry Davis mentioned in her post, the project with the committee members was also an iterative process and they very much enjoyed being part of the development. They especially appreciated that they had a voice in the development which made a difference in the outcome.

If an initiative was specific to an organization, I often collaborated with members of the volunteer department in that organization. We progressed to having community members/volunteers sit as members of our patient and family education committee. I am not sure who enjoyed the interaction more – the health care professional committee members or the volunteer committee members. There were many lessons learned from each other!
Terri

Thomas Bauer Replied at 10:11 AM, 2 Oct 2014

Clemens, I believe an essential step is routine inclusion in patients in transformation efforts to assure they are patient centric. This will begin to address the "intimidating nature" of healthcare that has been proven to be a barrier to addressing health literacy

From the patient perspective most educational offerings in health care are primarily in written and oral form. Yet up to 40% of all learners are visual learners, most educational offering are available Monday through Friday during normal business hours and as a result make it hard for many to attend and at times education offerings can be cost prohibitive for the patients.

We are making strides as a profession in addressing these barriers that create “road blocks” or barriers to engaging the patient in the conversation. Yet we have a long way in truly implementing patient education strategies that will reach a patient or learner when, how and where they prefer. It is the essential inform conversation that will increase the likelihood of engagement and activation....

At Novant Health we are researching methods to expand our educator’s toolbox to meet the needs of all of our patients through leveraging technology and the lessons learned in our universities.

Mighty Casey Replied at 10:24 AM, 2 Oct 2014

Not a straight-up literacy effort, but the new Patient & Family Engagement Roadmap from the American Institutes for Research, funded by the Gordon & Betty Moore Foundation, has a pretty meaty set of resources.

Full disclosure: I worked on this project. And proud to say I did.

Literacy and engagement go hand in hand. Once someone knows something, they become curious and want to know more. Sparking that curiosity, which in turn leads to empowerment and ownership, needs to be the bedrock of any health literacy effort.

Attached resources:

ALCIBIADES BATISTA GONZALEZ Replied at 12:11 PM, 2 Oct 2014

Regarding health literacy, "when", "where" and "how" are most of the time, more important than "what". Totally agree with Thomas: "engagement and activation" are essential keys to the success for any implemented project or strategy. Right now, I'm working on the design of a small project to improve the skills of healthcare workers in community work strategies. The goal is to reduce mother-to-child transmission of syphilis and HIV, which has increased in the west region of the country, even though Panama has a comprehensive national plan for the prevention of vertical transmission of syphilis and HIV. The key proposal is to achieve "engagement and activation" of communities through their leaders and social actors.

Thomas Bauer Replied at 10:52 AM, 3 Oct 2014

Today’s question.......What are some of the longer-term impacts of health literacy initiatives in your work—have you seen changes in patient satisfaction, adherence to treatment plans, increased quality/safety scores, lower costs, etc.?

Response- At Novant Health when we implemented the use of clear language, condensed our education so it was not so overwhelming and used Ask Me 3. Tell Me 3 (using the Ask Me 3 questions as the framework for our conversations) and Teach Back we did experience significant improvement in patient satisfaction in our pilots. In one instance we experienced a 40 point increase in percentile performance. This has been difficult to sustain in our 14 hospital system... We also experienced a 50% reduction in re-admissions for heart failure patient and an increase in distance between readmission.For more details please see my presentation at the Institute Of Medicine's Roundtable on Health Literacy
http://www.iom.edu/Activities/PublicHealth/HealthLiteracy/2013-APR-11/Video/B...

Lyla Hernandez Replied at 11:14 AM, 3 Oct 2014

A project that has shown significant impact on reducing readmissions is Project RED (Re-Engineered Discharge) (http://www.bu.edu/fammed/projectred/) developed by a research group at Boston University Medical School. They have a toolkit which can be downloaded. Throughout the years the Institute of Medicine Roundtable on Health Literacy has featured presentations by numerous experts who have described the impact of their programs and which are summarized in various reports, discussion papers, and commissioned papers. For example, you can find information about developing health literate ehealth communications, approaches to simplifying numerical information, informed consent, and many more topics at iom.edu/healthliteracyRT. All reports and publications can be downloaded free.

Rima Rudd Replied at 12:40 PM, 3 Oct 2014

Hi, I have enjoyed the exchanges and note a few fewer postings when it comes time for discussions of evaluations. This relatively new field of study is still focused on the development
of efficacious actions and strategies. We do not yet have very many evaluation studies yet BUT are eager to see such studies shared and in the literature. Many of you seem well poised for such work!
With appreciation for the sharing on-line here,
Rima Rudd


Dr. Rima E. Rudd Department of Social and Behavioral Sciences
Harvard School of Public Health

Terri Ann Parnell Replied at 1:13 PM, 3 Oct 2014

Thank you Thomas for getting us started today and congratulations on your efforts and improved outcomes!

In my past experience, we also saw some improvements in Press Ganey and HCAHPS scores related to specific initiatives implemented (i.e.: financial services project, language access services).

I agree it can be difficult to evaluate and maintain the enhanced results (as currently measured) due to so many other variables, which leads me to always ask the question, what are other ways that we can evaluate if a health literacy initiative was meaningful and successful? Is increased patient satisfaction an accurate measure of success in health literacy? Should we be “measuring” patient engagement, empowerment, and self-efficacy as initial outcomes of success? Over time, will these initial positive outcomes then lead to more successful self-management and self-care with improved health outcomes?

As Rima mentioned in her post, we do not yet have many evaluation studies in the field of health literacy. I welcome your thoughts regarding suggestions on innovative ways to measure and evaluate the success of health literacy strategies that can assist in the development of self-management skills and chronic disease management.
Terri

ruth parker Replied at 1:30 PM, 3 Oct 2014

In the last decade, much work in health literacy has focused on implementation and working to document what works/does not work. The published literature and research base have grown significantly, and the HARC (annual health literacy research meeting) is a great forum for staying connected to this. In addition, the AHRQ has published compendia that summarizes published research and their health literacy postings are another useful resource. As efforts continue in what many of us now call the second generation of health literacy, continued work to build the evidence base and understand how to best make interventions that have the greatest impact continues. Wonderful to see this key component of the field noted in our discussion, and appreciate the opportunity to highlight the critical role of evaluation in implementation.

Marie Connelly Replied at 2:35 PM, 3 Oct 2014

Terri, your point about whether we are tracking the appropriate measures when it comes to health literacy is quite interesting to me. A similar idea was raised in our GHDonline Expert Panel on the role of community health workers in the US last winter (http://www.ghdonline.org/population-health/discussion/expert-panel-opportunit...).

In that case, the question was whether traditional measures of evaluating impact in a clinical setting were as relevant to community-based interventions. Clearly the the challenge here is slightly different, as health literacy initiatives will naturally take place in a range of settings, but interesting that this seems to be a reoccurring theme in some of our discussions here in the Population Health community.

I'm curious what other measures we might look to as we evaluate health literacy initiatives? Terri's suggestions of "patient engagement, empowerment, and self-efficacy" seem highly relevant, but I'd be eager to hear whether others have ideas of additional measures as well.

Julie McKinney Replied at 2:36 PM, 3 Oct 2014

I, too, would love to hear strategies for measuring the impact of health literacy interventions on health outcomes. Thomas, how were you able to show that the interventions you did at Novant Health were responsible for the improvements in patient satisfaction and readmissions?

One problem is that we don't have very good measures of health literacy, nor have we as a field agreed on a conceptual framework. What do you all think needs to happen in order to fix those issues? And in the absence of a good measure or framework, can we assume that things like increased patient satisfaction scores and reduced readmissions can justify our interventions?

Thanks, Ruth, for mentioning the HARC research conference. It will be on November 3 & 4 in Bethesda, Maryland. (See link below)

Attached resource:

Julie McKinney Replied at 3:02 PM, 3 Oct 2014

I also wanted to say a couple things about engaging patients. When we recruit patients for advisory boards or focus groups, the easiest ones to recruit are often those who are more literate and speak English as their primary language. So it may take some extra effort to recruit patients who represent the true diversity of our target population. In a way, it is the less literate patients and those who are still learning English who are the ones that we most need to hear from.

This is why it can be very helpful to partner with a local adult education program. They have a large group of people from your neighborhoods who are taking classes to improve their literacy or learn English. There are scheduled times when the students meet as a group, and there are teachers whom they trust. This is an ideal way to have conversations with the people who represent your hardest-to-reach population. With a teacher as a liaison, you are more likely to get honest and thoughtful responses.

Groups of literacy students like this can give feedback through focus groups and interviews as Terri and Terry described. They can also pilot test your written materials, or do a walk-through of your physical space to give feedback on how easy it is to find their way around. In this way, they can contribute to the formative research of your improvement plans.

See the links below for two accounts of a partnership in New York City that demonstrates what I'm suggesting. It was between the Mid-Manhattan Learning Center and Harlem Hospital.

Attached resources:

Mighty Casey Replied at 3:07 PM, 3 Oct 2014

Weighing in again from my place in the end-user row, vs. the system side, I'll offer up this ongoing set of health literacy nuggets that will post throughout the month of October.

Full disclosure: one will carry my byline.

Emmi Solutions is a company that builds digital engagement tools and platforms. I have no financial interest in the company, but I'm a fan of their work and a friend of one of the leadership team.

Attached resource:

Mighty Casey Replied at 3:32 PM, 3 Oct 2014

Julie, you are SO right. Meet people where they are, and offer information. If they're already in learning mode, you'll get that message driven deeper and further. Great project!

Julie McKinney Replied at 5:31 PM, 3 Oct 2014

Mighty Casey,
Yes, it's true that when people are in learning mode (which includes a trusted environment, peers and leader or teacher) they are more open to learn and use new information! So it's a great place to teach health literacy and some basic health information, but I'm also saying that it's an opportunity to get the students to teach health folks about the best way to communicate and deliver healthcare. It's a two-way street!

Susan Auger Replied at 6:03 PM, 3 Oct 2014

Thank you to everyone who has posted so far and shared such great resources. I would like to pick up on Ruth’s comment regarding “continued work to build the evidence base and understand how to best make interventions that have the greatest impact”
I have been involved with community-based participatory research involving the training and coaching lay health educators in how to facilitate group prenatal education using a popular education/empowerment-based approach and photonovels (stories). The work addresses the issues of engagement, empowerment, health literacy, as well as health content. The concept of shared power, ‘everyone is a teacher and a learner’ is central.

A lesson learned in our process evaluation is that to preserve the fidelity of the empowerment-based approach (we call it the Teach-With-Stories Method) is that the ‘what,’ i.e., following the 5 basic steps is not enough, what makes the difference is ‘how’ the facilitators do it, i.e., their mindset. Are they in a ‘power sharing’ or ‘power over’ mindset. While our formal program evaluation focused on participant outcomes, from an evaluation standpoint, I think the learning we gained in how to communicate and make explicit the relational concept of what is meant by ‘shared power’ in practice is a valuable piece of the picture that cuts across the domains of health literacy, patient-centered care, and efforts to reduce disparities and promote equity.

We are currently working on a journal article to submit for publication in the next month. We are also in the final stages of completing a series of training videos for empowerment-based facilitation skills for training and coaching purposes. We found that visual and experiential learning was more effective than reading about it (Although we did create observation checklists to accompany the videos.) Recognizing that local communities may not have a lot resources or expertise in teaching and coaching these principles and skills, we took a lot of behind the scenes video during the research debriefing sessions and are planning to create a virtual learning community for lay health educators and others who might also be interested in learning and sharing how to cultivate this skill set. (This will occur early 2015, however, there are a few posts and an orientation video up now at www.twstories.com)

Julie, I appreciate your comment about the importance of communicating being a two-way street. I would be interested in learning more about how others define and teach what ‘shared power’ means in practice. Thanks again for the resources and rich dialog!

Thomas Bauer Replied at 7:32 PM, 3 Oct 2014

Julie, you raise a good question about how do I know if it was health literacy that impacted the results. The only changes in a stable system was the use of Ask Me 3 and teach back methods when educating patients. Sample sizes were large enough to assure the patient mix/complexity was not a determining factor... Over the past five years we have sustained a rate 85% transfer of knowledge (measured by a test) necessary for success after discharge for patients with heart failure. Once we use Teach Back a second time the percentage increases.

Thomas Bauer Replied at 7:40 PM, 3 Oct 2014

I enjoyed the conversation today about patient engagement. Within the next 30 days we will begin testing the use of a patient engagement tool (ACE Measure) prior to diabetes education and once the education has been completed. The assessment will continue at set times. As we develop various methods of education to meet the patient where, when, how they wish be educated, I believe this could be a valuable tool to help measure the impact. The ACE measure provides insight into the patient’s commitment to treating the condition, ownership of the treatment, navigation skills and education needs. In the end if education ( and other factors) does not lead to engagement the Triple Aim is not attainable

Clemens Hong Replied at 8:44 PM, 3 Oct 2014

Thomas and other panelists,

I know this panel has ended, but I'd be interested to learn more about this ACE Measure and other longitudinal patient engagement tools like this, if you are still online. It sounds like it is a way to track changes in health literacy/understanding over time. Is that correct? How does it compare to other tools? Is it a disease specific tool, or can it be applied more generally?

When I asked my initial question on patient engagement, I was hoping to learn about tools like this (e.g. similar to the patient activation measure) that can be followed over time. We are implementing a community health worker intervention for complex patients in Los Angeles County. We will have many patient education (chronic disease self-management support) materials embedded in our approach. They are designed for populations with low health literacy and will be delivered by community health workers who have a shared lived experience and are likely to have a much more comparable health literacy to patients (in contrast with clinicians). Still, assessment of health literacy will obviously be critical. The question we have is how to best assess health literacy in a longitudinal way in our patients. Any further thoughts on this? I'm happy to take this conversation off-line as well. Thank you.

Lawrence Wasserman PhD Replied at 12:49 AM, 4 Oct 2014

I worked on first prevention and health promotion of department health many moons ago.

For 30 years in Asia Africa etc in USA also prevention had no constituent therefore no finding except girl treatment purposes. Even ministry health budget and programs were treatment focus.

I had an initiative center for health education technology but interest and funding were absent. But nevertheless look forward to,robust organization that can gather funding support.

If theres such an institution please send me information.

Cheers to,all

Lawrence Wasserman phd

Marie Connelly Replied at 9:30 AM, 6 Oct 2014

As our Expert Panel has now ended, I'd like to thank our exceptional panelists, and all of our community members who participated in this incredibly rich discussion. We greatly appreciate the insights everyone has shared, and look forward to continuing to discuss these important topics.

We will be working on a Discussion Brief to summarize the key points from this Expert Panel, and will share details as soon as that is available on the website.

In the meantime, we would be grateful for your feedback in our short, (9 question) follow-up survey. These surveys help us understand the impact of our Expert Panel discussions, and your feedback is incredibly valuable to us. Please take the survey now, by visiting: https://www.surveymonkey.com/s/QZ3B263

Sudip Bhandari Replied at 9:01 AM, 29 Dec 2014

Many thanks again to our panelists and members who participated in this Expert Panel discussion in September 2014!

To help us understand the longer-term impact of these Expert Panels and plan future events, we have created a very short, 5 question, follow-up survey. This survey will only take 2-3 minutes of your time—please take the survey now at: https://www.surveymonkey.com/s/XTKGY6J

Many thanks,
Sudip

Ricky Leung Replied at 1:15 PM, 29 Dec 2014

I think this is an excellent panel, with intriguing comments and thoughts for significant questions about health literacy. And I think this online platform has added even more to the original discussions. Participants are willing to share different kinds of resources and their experience in fostering health literacy. Such a supportive online atmosphere is rarely seen in other similar online platforms. I have learned a lot and hope this will continue. Thanks to everyone!

Monica Jumpp Replied at 1:08 PM, 5 Feb 2016

Many thanks again to our panelists and members who participated in this Expert Panel discussion on implementation strategies for health literacy initiatives! We have created a discussion brief of this great conversation which can be found here: http://www.ghdonline.org/health-literacy/discussion/launching-a-health-litera...

Yudha Saputra Replied at 9:42 AM, 7 Feb 2016

Dear Monica,

Thank you for sharing worth-full information regarding to health literacy.

May I share it in my twitter timeline, by adding hastag of my account (#yurhealth), and shortened the link with url shortener?

I apologize for my lack of understanding of sharing content regulation. I would like to share it because I felt this kind of information would benefit to others, and may attract those who have not yet involved in this online discussion, when they actually have capabilities to involve in it.

Your enlightening would clearer my doubt

Again, thank you

Yudha

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Panelists of Launching a Health Literacy Initiative: Implementation Strategies and GHDonline staff