2013 Conference Recaps

Closing Keynote – Panel

From left to right: Michael Villaire, MSLM, Rima E. Rudd, Sc.D, Cecilia Doak, MPH

From left to right: Michael Villaire, MSLM, Rima E. Rudd, ScD, Cecilia Doak, MPH

Beyond Cultural Awareness: A Unified Approach to Better Outcomes and Reduced Health Disparities

Olivia Carter-Pokras, Ph.D.

Olivia Carter-Pokras, Ph.D.

What are health disparities? They are, according to Dr. Carter-Pokras, who has spent three decades in the study of health disparities, differences in health outcomes that we can measure, that we have the tools to address, and that ethically, we are obligated to address. We know that disparities do exist across all dimensions of access and quality of health care, across many clinical conditions, and many subpopulations.

The Annual report on National Healthcare Disparities in 2012 noted no changes in rates of poor communication, and no improvement in areas like diabetes care and maternal and child health and thus a need to accelerate progress. National developments, such as Healthy People 2020 and new CLAS standards have precipitated local developments, and rapid embracement by legislators. A number of states have passed cultural competency training mandates — though it is often the case that such mandates are unfunded.

Another issue is that cultural competency research and training is at work separately from health literacy training and research — and Carter-Pokras wonders why. Each has common interests but they are not on the same bus, or at the same conferences. In the October 2012 issue of the Journal of Health Communication, Carter-Pokras and her fellow authors note that “competencies have been developed for cultural competence training (Lie et al., 2008), and health literacy competencies are being developed. But educational research in each field is being conducted independently despite overlapping constructs and common desired patient outcomes.” Health literacy is often “housed” in quality improvement, and cultural and linguistic competency are aligned under patient satisfaction, when they are instead complimentary. “What better place to begin than a collaborative of health literacy and cultural competence educators working together to share tools, training strategies, and resources for the common goal of health disparities reduction, improved research agendas, and outcomes?”

So, we need to educate medical students in cultural competency and health literacy together — but how? Carter-Pokras and others have created a new “Primer: Cultural Competency and Health Literacy: A Guide to Teaching Health Professionals and Students” from the University of Maryland School of Public Health and the Maryland Department of Mental Health and Hygiene, released in May. Its stated intent is to be a resource guide to help “students and health care professionals learn how to reduce health disparities and improve health outcomes through culturally sensitive and effective communication across health disciplines.” The Primer is free and easily accessible as a download. There are six instruction modules, and learning objectives are arranged by type of competency: knowledge, attitudes and skills. Contents come from credible sources and to the extent possible, the resources in The Primer are evidence-based, though Carter-Pokras cautioned that very little research has been done—there are as few as seven studies that look at outcomes. “Moving upstream from health services research to health professions education as another solution is a logical, positive response to the call to action.”

A Patient’s Perspective on the Health Literacy Myth

Marina Ross

Marina Ross

How do you prepare to be a patient? This is the question that Maria Ross, a college-educated business owner with an interest in acting, asked her audience. The story she told of her brain aneurysm and recovery was ample proof that you can’t. Her point was that we can do a better job of helping the health care system understand what it is like to be a patient. Her talk, she said, would be about patient care versus patient processing.

A common thread ran through Ross’s story about the weeks she spent in intensive care, months of therapy and home care, and against the odds, her recovery. It was the sensation that she had “dropped into a foreign language.” The doctors had saved her life, but she and her family struggled to understand what that life would be like. She recognized through her experience, that ongoing maintenance and abilities for self care are what patients need, just as much if not more than the medical prowess that saved their lives. She quoted Lori McKitrick , a speech therapist at the Survivorship Training and Rehab (STAR) program, Greenville, S.C “In a lot of hospitals you will see patients fall through the cracks after surgery….We are doing a great job saving people’s lives but we have to help them live their lives, too.” (WSJ, Jan 2013)

This recognition has led her to teaching health literacy skills like teach back and serving as a Patient Advisor at the University of Washington Medical Center.  Among her recommendations: ditch the jargon. The hospital is your world not ours.  What’s common knowledge in your business, your tribe, is not in ours. We all take for granted that “our world” is everywhere. Similarly she advised providers to understand the patient’s context. She recalled the story of a person who came to her home during the recovery process to deliver resources for the blind. Though she had successfully undergone surgery to reverse blindness resulting from the aneurysm, she was not, at that point, blind. The person dismissed this context, and did what he felt was his job to do — he delivered those resources.

Ross reminded the audience that silence is not golden, nor is “yes.” Patients need to ask for information to be repeated and to ask questions like “what do you hope to find out from this test?” Providers need to be looking at questioning as a sign of engagement, like taking notes. Don’t assume that patients have been told something — either by another person, or by you. Use checklists and scripts so you can be sure you’ve said what needs to be said, and recommend reference materials. And get creative — use teaching aids, written materials, and 3-D models. One of the memories she has retained, in spite of the fact that it happened when she had difficulty with short-term memory, was an explanation given by a provider who used a model.

The recommendations Ross offered were clear and simple and perhaps familiar to many in the audience, but particularly acute in the context of her story. She pointed out that according to the U.S. Department of Health and Human Services, “Nearly 9 out of 10 adults have difficulty using the everyday health information that is routinely available in healthcare facilities, retail outlets, media and communities” (2011). This ratio, she said, would be considered an abysmal failure in any other industry. Familiarity with solutions does not mitigate our need to implement them. 

2013 Health Literacy Awards


IHA, a nonprofit healthcare organization and a leader in the health literacy field, received nominations from the nation’s foremost health literacy authorities and researchers.

Winners were selected in the categories of Research, Innovative Programs, and Published Materials.
The winners of the three 2013 IHA Health Literacy Awards are:
Research: Co-winner
Canyon Ranch Institute Life Enhancement Program

Canyon Ranch Institute Life Enhancement Program

Canyon Ranch Institute Life Enhancement Program (CRI LEP)
Canyon Ranch Institute Life Enhancement Program (CRI LEP) is an evidence-based, multi-disciplinary, integrative program that increases health literacy while preventing, diagnosing, and addressing chronic diseases. CRI LEP is a powerful, guided experience designed to help participants make an enduring personal commitment to their health and wellness.

Research: Co-winner
From left, Michael Villaire, MSLM and Christine Kennedy, RN, PhD

From left, Michael Villaire, MSLM and Christine Kennedy, RN, PhD

“Picture This” — mobile technology to help improve health literacy and outcomes
Christine Kennedy, RN, PhDUniversity of California, San Francisco
Dr. Kennedy designed and oversaw implementation of “Picture This,” a pilot research study that investigates the possibility of leveraging mobile health (mhealth) technology to further health literacy research and practice to bridge ethnic and racial health disparities. The objective of this three-phase study was to develop a mobile phone application (mHealth app) to help healthcare providers to promote more physical activity and less sedentary behavior among patients. There is a need to bridge the challenges of low health literacy in this effort. Mobile phones offer a unique opportunity to address low health literacy and health disparities because of their widespread use in the population and as a platform that can provide visual content with minimal text.

Innovative Programs
From left, Michael Villaire, MSLM, Polly Smith, MA and Rhonda Johnson, DrPh

From left, Michael Villaire, MSLM, Polly Smith, MA and Rhonda Johnson, DrPh

Peer Language Navigator (PLN) Project
Rhonda Johnson, DrPH and Polly Smith, MA, Co-Chairs
The Alaska Health Literacy Collaborative (TAHLC)
The goal of the Peer Language Navigator (PLN) projects is to create a support network that bridges the many cultural differences and language barriers, to provide limited English proficient populations with important healthcare information, and to increase provider awareness of low health literacy barriers to effective care. In response to identified and shared concerns about health literacy, TAHLC initiated PLN projects that identified ethnic community members primarily from recent immigrant and refugee communities who would be interested in working with health and adult education providers in developing health messages and materials that are culturally competent. Extensive training and respectful discussion to develop a message that is understandable and culturally relevant was required. PLNs have assisted in bringing health messages and information in their own language to ethnic communities.

Published Materials
From left, Michael Villaire, MSLM and Poppy Strode, MS, MPH, RD

From left, Michael Villaire, MSLM and Poppy Strode, MS, MPH, RD

WIC Nutrition Program Handouts: I’m 1, I’m 2, I’m 3, I’m 4
Poppy Strode, MS, MPH, RD, Public Health Nutrition Consultant
California Department of Public Health Women, Infants, and Children (WIC) Nutrition Program
The California Department of Public Health WIC (Women, Infants, and Children) Supplemental Nutrition Program developed a series of handouts (“I’m 1,” “I’m 2,” “I’m 3,” and “I’m 4”) for parents of toddlers and preschool children. These parent handouts were designed in alignment with the California WIC Program’s adoption of participant-centered education. The materials are not only easy-to-read, but are also designed to support an interactive approach during individual nutrition education. Staff engage parents in reading and working with each handout, so there is more participation during the session and parents are more likely to keep and use the handout at home. Also, the circle chart in each handout allows parents to choose a particular topic to focus on in discussion with WIC staff.

Health Litearcy Hero Award
From left to right Michael Villaire, MSLM and Andrew Pleasant, PhD

From left to right
Michael Villaire, MSLM and Andrew Pleasant, PhD

Presented to Andrew Pleasant, PhD
Andrew Pleasant received the IHA Health Literacy Hero Award. IHA created this award in 2008 to honor individuals who have made significant contributions to the health literacy field. The inscription on the award for Dr. Pleasant read: “For Demanding the Very Best From the Health Literacy Community and Never Failing to Deliver the Same.”

Leonard Doak Memorial Scholarship in Health Literacy
From left, Chazz Glaze, Cecilia Doak, MPH

From left, Chazz Glaze, Cecilia Doak, MPH

Presented to Chazz Glaze, Salud Family Health Centers
Chazz Glaze is the first recipient of the Leonard Doak Memorial Scholarship in Health Literacy. The scholarship was set up by health literacy trailblazer Cecilia Doak to honor her late husband and longtime colleague, Leonard Doak, who passed away in July 2012. The scholarship paid for all expenses for one individual to attend the Health Literacy Institute in Maine. The winner also works with a mentor for a year to achieve the projects they listed for themselves in their application. Glaze’s mentor for the year is Cecilia Doak. 
The Institute for Healthcare Advancement donated $5,000 to the scholarship fund. Canyon Ranch Institute and the California Department of Public Health WIC Program donated $500 awards to the scholarship fund as well.

Patient Engagement: Your Guide to Patient-Centered Care

Mary Jean Schumann, DNP, MBA, CPNP, FAAN

Mary Jean Schumann, DNP, MBA, CPNP, FAAN

According to the 2013 White Paper from the Nursing Alliance for Quality Care, co-authored by Mary Jean Schumann: “Patient engagement is the involvement in their own care by individuals (and others they designate to engage on their behalf), with the goal that they make competent, well-informed decisions about their health and healthcare and take action to support those decisions.” 

Why does patient engagement matter? It’s about getting to better health outcomes. Moreover, the impetus to move towards a patient engagement model must come from healthcare professionals, specifically nurses. Even when you have patients who are highly engaged and energized, says Schumann, the system does not necessarily reward them.
Schumann outlined nine guiding principles of patient engagement, beginning with partnership between providers, patients, and the families of the patients. At minimum there needs to be two experts in the room. Each has knowledge that the other needs in order to reach a good outcome. Patients know about themselves, their preferences, values, and resources, whereas the healthcare team member understands the medical evidence, including risks and relative odds of different outcomes.

Nurses and others must practice a person-centered approach to healthcare delivery and be willing to fully support patients as they encounter obstacles in the healthcare system. Healthcare professionals must also embrace and continuously support the belief that patients and families are or can become competent to engage fully in making informed decisions about their own health and healthcare.

Health Literacy: The Missing Link in Public Health?

Andrew Pleasant, Ph.D.

Andrew Pleasant, PhD

Andrew Pleasant, PhD, Senior Director for Health Literacy and Research at Canyon Ranch Institute, affirmed that “health literacy is the tool that can help people, and help health systems help people, to live a life of health and wellness and lower costs — regardless of socioeconomic status or other social determinants of health.” It can help people use the skills they have instead of being daunted. But, he added, though we talk about the power of health literacy correlated to health outcome and health status, we haven’t yet changed the world as much as we’d like. The health of the world continues to decline and the cost of health continues to rise. Our healthcare system absolutely requires proficiency, but 88% of us are below proficiency level.

Pleasant defined the task of public health as standing in front of millions of people and persuading everyone to move 5 steps to the left. Persuasion is one of 4 options available to public health. The others are regulation, technology development, and education. But, if you lose sight of the individual in the midst of the public context, it’s hard to create behavior change.

He gave several examples of public health campaigns that, seen through a logic model, failed. The logic model illuminated the points at which the campaigns went wrong. Perhaps the most powerful example was the anthrax scare in the United States. Information was widely available and thus easy to find, but there was low public understanding due to complex government information sources. The public failed to evaluate the risk accurately, and assumed everyone was at risk. There was little communication or feedback between those giving information and those receiving it, and the result was that information was misused counter to public health benefits; in fact, antibiotic usage increased in every state in the nation.

Why Are You Giving Me This Number? Accurate but Meaningless Health Data

Brian Zikmund-Fisher, Ph.D.

Brian Zikmund-Fisher, PhD

Brian Zikmund-Fisher, PhD, began his presentation with a barrage of numbers with which patients have to deal, including risk percentages, treatment success rates, blood test results, medication dosing charts, and nutrition labels. As an example of an objective numeracy measure, he asked the audience which represents the higher risk: 1-100, 1-1000, or 1-10? (Answer: 1-10.) Subjective measures of numeracy include the questions, “How good are you at working with fractions?” and “How often do you find numerical information useful?” He cautioned that, as with other kinds of literacies, numeracy does not equal education level. 

Problems with numeracy — the ability to understand, transform, and derive meaning from quantitative health information — can often come from the way the information is represented. Zikmund-Fisher pointed out that the objective question he asked the audience exemplified this problem. Because people assume that an increase in the denominator means an increase in risk, people may have been confused or doubted the right answer, even if they got it.

Zikmund-Fisher pointed out the dual nature of risk: there is the risk of occurrence, and then there is non-occurrence. Risk calculators tend to focus attention on the numerator (occurrence risk), and patients must do mental math to see the equivalent risk of non-occurrence. It’s also important to ask what we want patients to know about risk. Or, we can ask, what do our patients need to do? Zikmund-Fisher introduced the “harm anchor” as a practical concept: it is the point at which something needs to happen. Harm anchors may sometimes need to be the focal point of numerical information.

In order to overcome numeracy barriers, we need to provide context, know that less is more, and match the format to the need. We do not want to use “might want” or “need later” to figure out what to include in our discussions or materials. The ethical obligation for transparency cannot override the requirement to be actually useful in a given moment for a given individual. We must recognize why we are providing data before we provide numbers.

Richard H. Carmona, MD, MPH, FACS • Jennifer Cabe, MA

Richard H. Carmona, M.D., MPH, FACS

Richard H. Carmona, MD, MPH, FACS

Richard Carmona, MD, 17th Surgeon General of the United States (2002-2006) and President of Canyon Ranch Institute, has spent 11 years preaching the gospel that health literacy involves cultural competency, and both are integral, not ancillary, to public health. To underscore the point, he joked that the degree he really needed, in addition to being an MD and RN and having a Masters of Public Health, was in anthropology. But he is still pondering the question of how to operationalize that gospel. The question, he says, is not about the science. It is about how to deliver health information in a way that creates sustainable behavior change.

During his presentation, Dr. Carmona recounted several experiences that taught him about execution and operationalizing. He described being at a fast food restaurant with his family. When he realized that many people recognized he was the Surgeon General of the United States, and that he was holding a French fry, he immediately dropped it. There, he said, was a great opportunity for teaching and learning when he dropped that fry. 

As the Surgeon General, he wondered, for whom do we write the Surgeon General reports? Are they for the people? He realized that his grandmother who never spoke English would not be able to use the information in reports like a 900-pager on smoking cessation. How, he wondered, does that information get to people so they can take action? As a result, his team created “The People’s Piece” to ensure that the best science available was offered in a way that was understandable and culturally appropriate.

Dr. Carmona told the audience that we need to create resonant messages that change lives, to take what we know and get it out to all providers. So much of what we are trying to tell people is simple: wear a seatbelt, don’t smoke, walk a little. If we don’t have the ability to get the information to the people who need it, he says, we’re all going to pay. If we don’t engage the public, we will perish. But with the knowledge we have, we can do this. 

Jennifer Cabe, MA

Jennifer Cabe, MA

Jennifer Cabe, Executive Director of Canyon Ranch Institute, provided perspective on how health literacy plays out in light of the Affordable Care Act. It is, she says, a crack in the wall between people who need access to the system, and the system. Though there are only five explicit mentions of health literacy in the ACA, it is infused throughout. However, there remains lots of work to do. Navigators are key to widening the crack in the wall. Accountable care organizations (ACOs), groups of hospital systems and physician groups working together to improve patient experience, care coordination, patient safety, and preventive health, will become the predominant form of healthcare.

Health Literacy Association: Discussion Group

From left to right: Michael Villaire, MSLM, Julie McKinney, MS, and Sabrina Kurtz-Rossi, MEd

From left to right: Michael Villaire, MSLM, Julie McKinney, MS, and Sabrina Kurtz-Rossi, MEd

Conversations about forming a Health Literacy Association started about a year ago, right around the time of the 2012 IHA Health Literacy Conference. Similar conversations continued at this year’s conference with an open discussion on what the next steps should be for a Health Literacy Association becoming a reality.

The discussion opened with the question: “How many here tonight have a job position that has a title with ‘health literacy’ in it?” About four people raised their hands. Kurtz-Rossi acknowledged that many more in the crowd do health literacy work as some part of their job. “As health literacy continues to become a rising profession, it’s time to take the formation of an association seriously,” Kurtz-Rossi asserted. “Tonight is about discussing what types of things you would benefit from in having an association.”

The session quickly fashioned itself into a town hall meeting where the ideas and thoughts of the community were shared. Kurtz-Rossi and many others agreed that the association should be a “very large umbrella” that provides a community for people of various professions.
McKinney added: “The idea that special interest groups from other associations become a part of the Health Literacy Association sprouted from the Listserv. Many people at this conference come from various groups, but we want to be able to centralize our supporters into an association that can produce research results, set standards, and ultimately, improve the quality of care.”

    A few questions were left for reflection:

  • Would the association be more community-oriented or regulatory?
  • If regulatory, what will be the standards of practice?
  • If we are more community-oriented, what types of services are we going to provide?
  • Are we sure that we would like a new organization? Should we keep the possibility of merging with another organization open?

Health Literacy 101: An Introduction to the Field

Michael Villaire, MSLM

Michael Villaire, MSLM

Michael Villaire’s preconference session provided an introduction to the topic of health literacy for the conference’s first-year attendees, or as a refresher for those who had attended before.

He began his talk by reviewing definitions of literacy and health literacy. He noted that commonly used definitions of health literacy emphasize patients’ ability to obtain, use, and apply health information in their everyday life. He noted most definitions place the burden of understanding and using health information on the patients themselves, rather than the providers. He stated his preference for the Calgary Charter definition of health literacy: “Allowing the public and personnel working in all health-related contexts to find, understand, evaluate, communicate, and use information.”

There are many components of health literacy: reading, writing, listening, speaking, numeracy, self-efficacy, and cultural and belief systems. “People will have different interpretations of the information you present to them; remember to always be mindful of that,” he said.
Villaire provided a number of examples to show how easy it is for a patient to misinterpret information. He also shared clips from the AMA Foundation video of patients with limited health literacy. He closed the session with data on the costs of limited health literacy, amounting to between $106 billion and $238 billion per year.