The Joys and Challenges of Diversity: Getting the Message
Janet Ohene-Frempong, MS
How does diversity fit into low health literacy? This is the question that kicked off at "The Joys and Challenges of Diversity" presentation. Ms. Ohene-Frempong started the presentation by defining health literacy: an expanded model, health literacy is defined as "the wide range of skills, and competencies that people develop to seek out, comprehend, evaluate and use health information and concepts to make informed choices, reduce health risks and increase quality of life". Thus health literacy, per this definition, is made up of four domains: fundamental literacy, science literacy, civic literacy, and cultural literacy.
From this definition, Ms. Ohene-Frempong focuses on the cultural literacy domain. "Understanding culture is an important component to providing health care services," she stated, "as it relates to communication, time orientation, pain, religious beliefs and more." However, she explained, the term culture can be a confining term. Cultural literacy tells us that we should be sensitive to people of different cultures (e.g. Latinos, African Americans, American Indians, etc) but the term diversity asks us to look beyond culture, and examine all things that make people different. For example people who are overweight, gay, old, have low education or income, physical and mental disabilities. Ms. Ohene-Frempong exclaimed that, "these are the types of differences that cause individuals to receive ineffective and uncaring care; and this is why we are discussing diversity and not just culture."
Ms. Ohene-Frempong continued stating that as health care providers, "above all we are trying to convey to our patients that we care. But many times these messages of 'I care' can be lost, even when the intentions are good." Ms. Ohene-Frempong explained that as health care professionals "just because we care, doesn't mean we're being sensitive to others differences." She concluded her discussion with a description of her personal journey as a mother of a sick child. The personal anecdote pointed to the need for compassionate care for all patients, no matter their differences. She impressed on the audience that healthcare providers need to be "interested in their patients without being judgmental; that individual difference shouldn't be tolerated, but honored if we are truly going to care for our patients."
Bridging the Gap for Older Persons with Limited Health Literacy
Rebecca Sudore, M.D.
The elderly population is disproportionately affected by low health literacy due to chronic disease burden, high number of medications, caregiver burden, and hearing, visual, and cognitive impairments. Dr. Sudore, M.D. of UCSF, discussed how health care providers can overcome low health literacy barriers with elderly patients. She explains elderly patients with visual impairment can be assisted through the use of written materials that employ large fonts, bright contrasting colors, use of non-glossy paper (to reduce glare), and non-serif fonts. Hearing impairment can be combated by speaking slowly (but not speaking louder!), leaning in, facing the patient, and ear cupping. Additionally, simple technology such as the pocket talker has been found to be helpful during patient interactions for patients with hearing impairments.
Using clear verbal health communication can lessen the burden of chronic disease and the high number of medications. By using plain language, simple instruction on how manage daily activities, simple diagrams, along with the use of the "Ask-Tell-Ask" model can improve the communication of health information with elderly patients. Dr. Sudore emphasized that the question "do you understand?" should never be asked as it places the burden of understanding on the patient, and can induce feelings of shame. Instead, "what questions do you have?" should be asked.
However, when patients have reduced cognitive functions using tools such as Ask-tell-Ask model may not work. This does not mean that these tools are no longer important in these situations; but that they should be used with the patient's caregiver instead. As a health care professional it is important to remember that one should never assume the health literacy level of the caregiver.
In her research, Dr. Sudore has found that alerting consent forms so that they read at a 6th grade reading level and working with patients using the "teach-to-goal" method greatly increased elderly patients understanding and decision making abilities. Through her research she has found that patients need easy to understand written and visual materials to assist in decision making. This lead her to develop an advanced directive website, PREPARE. Her research found that in order for the website to be most effective for the elderly population it must be simple, include intuitive buttons, large font, a how-to voice, videos that model behavior, voiceovers and closed captioning. She illustrated how technology can be effectively used to overcome many of the elderly patient's health literacy barriers.
Attendees left the session feeling empowered and prepared to meet the specific needs of the elderly population.
Finding the Right Resources to Meet Your Health Literacy Needs
Julie McKinney, MS
In addition to demonstrating the above online resources she detailed local resources; which include your local/community advocacy programs, local healthcare organizations, and local adult education programs. McKinney stressed that the most important resource available is your community. By getting to know your community and understanding the specific health literacy barriers that exist, effective changes can be made.
After the presentation attendees were eager to ask McKinney for resource recommendations regarding their specific needs. McKinney spent the remainder of the session guiding individuals towards the most effective resources for their individual projects.
Implementing Health Literacy in a Large Company: An Example from Pharma
Laurie Myers, MBA; Carolyn McKay, Ph.D.; Margaret Loveland, M.D.; Lesa Gerard
Four representatives from Merck presented at the conference. Their collective presence, from a variety of departments of the company, represented one of their primary strategies, which is to achieve buy-in at every level of the company around the issue of health literacy.
All four stressed that one of the most effective ways to gain the commitment of your leadership is to align key strategic objectives in your company to health literacy. For Merck this is adherence. Health literacy affects outcomes directly through its effect on adherence. They also talked about the need to educate others within their department and across other departments about health literacy. All four also stressed the important of having a voice from the legal team talking about risk at the table.
Merck began to include health literacy with a very specific empirical evidence-based pilot. They were interested in interventions based on research, rather than research on the problem, which they felt has been well documented.
They worked both externally and internally to get the word out throughout the company about health literacy. As a member of the IOM Health Literacy Roundtable, Caroline is motivated and inspired to get the word out throughout Merck about health literacy. Another tactic worked was to bring in an outside expert advocate, Dr. Arthur Cuthbert, formerly of HL Missouri.
Internally, the bottom line, the ROI (return on investment), spoke the loudest. They included key leaders. They have begun to share health literacy stories with employees via e-mail. They noted that leadership will respond to different kinds of evidence or reasons for why a company should engage in health literacy.
They mentioned several internal barriers such as encountering the fear that if they simplified language, they would insult people. There was some resistance with the communication and marketing department, around issues of expertise and lost creativity. They recommended developing a power point presentation that includes before and after examples that demonstrate the value of clear communication and an "elevator speech" paragraph that clearly aligns patient safety with health literacy.
Finally, they talked about initiating pilots. They stressed that they are at the beginning of the process (several times there was mention of how recently they had been introduced to health literacy), and again said that they are a heavily regulated industry, unable to open themselves up to risk. For this reason, they chose a pilot that involved, un-branded patient education materials, and was not tied to one of the products, so they had more room to work with legal, and within regulations. They also needed to tie it into overall end-to-end development, into systems that are already in place. They are still in the primary stages of this work, and working on how to go out and test with clients, with the intended audience. They offered no other details about the pilot except in response to a question from the audience, said the materials are intended for patients directly, and are not intended to be delivered by representatives. We're just at the beginning, they stressed. One and a half years ago many at Merck had not heard of health literacy. This is a work in progress, they promised.
Usability Testing on a Dime
Joan Winchester, ME.d.
Ms. Winchester began with a video showing someone trying to turn on a faucet. After 30 seconds, it was clear to the audience that the faucet was not user friendly-the person could not figure out how operate the faucet. The design got in the way.
For written materials, the main question might be--is what I want to communicate actually communicated? Usability testing is evidence, verification, one way or the other.
What and Why
Usability testing is watching people use your product to find out if it works. A good question to ask is, do you know what the purpose of this flyer is? Usability testing can be done on websites, forms, and brochures. It is done one-on-one, it can be "formal" in a special room with video, or informal and it is not a focus group or market research.
Ms. Winchester gave five steps for usability testing:
- Decide what you want to know
- Focus on 3-4 major issues, target the big picture and a few details. If you are testing a website, for example, test the home page.
- Write a simple usability test
- Recruit participants
- Create a schedule and plan for no-shows and extras
She elaborated on some of these details, including advice about writing the test to insure that everyone gets tested the same way-it needs to be friendly but scripted. If you choose to use an audiotape, then a consent form is necessary. She advised using a combination of open and closed questions, and gave examples:
Another good option is to have the tester read the brochure aloud and ask them to tell you in their own words what it says. Usability testing typically includes a specific task or scenario, and Winchester advised making sure that the task is short, specific, and real. In addition, you need to make sure that your questions do not inadvertently give clues to the tester-that you are not leading.
- What do you think this is for?
- What are you thinking now?
- What would you do next?
- What are you doing now?
A member of the audience asked if it was better to use "universal precautions" and test everybody, or to test people who read at a 5th grade level. Ms. Winchester said that who your participants are depends on who you want to be able to use the product. She advised recruiting clients from community based organizations with populations similar to those intended to use the brochure or website. She also listed the attributes of a good tester, including friendliness, organizational skills, and ability to probe the participant, keep her on task, and help her clarify answers without leading.
Where and When
The key features of a good testing space are quiet and privacy. If you are testing in an organization where clients have appointments, it is good to be near the reception area, so appointments aren't missed. The key to when to test is before production, and in time to use the results of testing to make changes. If you can, it's good to test more than once, so you can see if changes made after the first round are effective.
Why on a dime? Ms. Winchester suggested that you can pay clients anything from a handshake to $35 dollars for their time. Clients are usually pleased to participate. In addition, usability testing is very efficient. You don't need to test 25 times to spot a problem. Usually after 3-5 participants, you know what does and doesn't work.
Finally Ms. Winchester advised that you get great ideas about how to fix the problems from the audience, and that direct quotations from the testers are really powerful ways to convince your client that changes need to be made.
Including People Who Experience Intellectual and Developmental Disabilities in Health Literacy Programs
Joan Medlen, ME.d., RD
||Joan Medlen from JEM Communications shows facts about how people with disabilities are treated now versus in 1975. It's hard to believe some of the facts.|
In 1975, people with disabilities:
- Rarely had literacy skills. 4 out of 5 were denied education.
- Most lived in state institutions
- Could not vote
- Could not make legal decisions
- Did not have jobs
- Had little or no choice about their health care
Medlen makes a point of stating that people with disabilities need to be spoken to using "person-first" language. Make the connection with that person and make he/she a priority. Look for common ground, wait for a response and have fun.
|Fortunately, we've come a long way to improve services for those that are disabled. Now:|
- All children receive "free and appropriate" public education
- Most children leave the system with low literacy skills at 2nd grade or better
- Generally, leave the system with visual literacy skills
- Live the community
- Live with friends or on their own
- Have jobs
- Make their own decisions
Successful communication must be relevant, understood and persuasive. Become an active partner in the dialog. Research shows that people with intellectual disabilities generally understand more than they can easily share. Some tips for good communication partner skills include:
Remember that communication is 55% visual; 37% vocal and 7% verbal (actual message).
- Greet with a smile
- Respect personal space
- Introduce yourself
- Allow for sensory needs
- Give and maintain eye contact
- Speak in the first-person and by name
- Use positive language
- Wait for a response
- Use simple terms
- Offer visual cues
Last, but never least, don't give up on the power of being a good communicator and positive thinker. Today's world has come a long way, but there's still room for more improvement. Your knowledge and energy can make the world a better place for people with disabilities.
Learning the Language of Health Literacy Grants
Linda Shohet, Ph.D.; Elke Ruthig, RN, BScN
There's an art and science to grant writing. Having the right tools and resources are absolutely essential to your success! Linda Shohet, Ph.D., and Elke Ruthig, RN, BScN from The Centre for Literacy in Quebec are experts in the field of grant writing. Their presentation gives participants a real-life, hands-on approach to writing winning grants.
Shohet shares how writing a health literacy grant can bring you the resources you need to develop projects and programs that move the health literacy agenda forward. But before you start, you must identify your health literacy problem or issue definition, then do some preliminary research about the issue and identify potential funding sources. In doing so, you should engage and confirm organizational support.
In writing a grant, you need to understand a funder's mandates & priorities, as well as their mission and vision. A clear understanding of the funder's mandate will focus your efforts toward the kind of health literacy evidence needed for the background information on the submission. Focus your message on what's in it for the funder and be sure to have a clear understanding of their business, vision and goals.
A grant generally consists of eight points: the letter of intent (LOI), problem or need statement; methods or implementation plan; evaluation strategy; budget; appendices; and executive summary.
- Many funders now request a LOI that includes a brief overview of your organization, your problem statement and summary of the population you are focusing on. Your LOI will be considered the first impression you make. Funders read this first and use it to determine if they want to know more.
- A clear problem statement offers a strong rationale for why your project should received funding out of all the other applications-again, it's very critical that you support your case with data and evidence.
- Goals are broad statements-they explain what you want to achieve; highlighting impact and results. Objectives provide your "how" statement.
- Your method or implementation plan needs to provide a roadmap of how you will achieve the objectives of the project. Your implementation plan can be developed via a GANTT chart that shows an outline of your tasks.
- Always evaluate if you achieved what you set out to do. Be sure to match your proposal goals, objectives and implementation plan.
- Determine what budget is available and allowed by the funder. Also determine direct and indirect costs.
- Appendices match your funder requests and must be referred to in the body of the proposal.
- Always write your executive summary last. The funder will take first impressions from this.
In closing, Ruthig provided tips for avoiding pitfalls and emphasized the importance that every grant is unique. Funders need to know that you are in-line with who they are and what they offer. The more closely aligned you are with their goals, the better chance you have of winning that grant.
IHA 2012 Health Literacy Awards
IHA, a non-profit healthcare organization and a leader in the health literacy field, received more than 80 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 2012 IHA Health Literacy Awards are:
SipSmartER: A nutrition literacy approach to reducing sugar-sweetened beverages
Jamie Zoellner, Ph.D., RD, Assistant Professor, Department of Human Nutrition, Foods and Exercise,
Sugar-sweetened beverages, such as soda, fruit juice, sports drinks, and sweetened teas, contain added sugar. Consumption of sugar-sweetened beverages has been linked to increased risk for diabetes, obesity, cardiovascular disease and cavities. Even with the mounting research linking sugar-sweetened beverages to poorer health, the average individual's intake of these beverages doubled from 1977 to 2002. Currently, sugar-sweetened beverages make up 10% of the total caloric intake of adults. The SIPSmartER research program developed by the Department of Human Nutrition, Foods and Exercise at Virginia Tech, is a unique project targeted towards educating low health literate individuals within rural southwest Virginia about sugar-sweetened beverage consumption. The SIPSmartER program strives to create lasting health behavior change by providing participants with easy to understand instruction on the impact of sugar-sweetened beverages on health, information on how to read beverage nutritional labels, as well as how to decipher nutrition-related media. Health literacy concepts have been integrated into every aspect of the study, from development of the intervention to its implementation. The SIPSmartER program is a long-term community-based study on the reduction of consumption of sugar-sweetened beverages. Due to Americans' increasing consumption of sugar-sweetened beverages and the adverse health consequences of consuming these beverages, increasing our understanding of how to properly communicate this risk to reduce individual's sugar-sweetened beverage consumption has widespread public health implications.
Health Literacy e-Learning Course
Sara Voit, Director of Learning; Jill Cobrin, President and CEO,
Affiliates Risk Management Services, Inc. and its Center for Affiliated Learning
Affiliates Risk Management Services (ARMS), Inc., provides risk and quality management services to organizations with the aim of reducing risk and improving overall health outcomes. To improve health literacy ARMS provides steps on how healthcare providers could better prepare and react to the challenges of health literacy through an online education course. The course is targeted to patient-centric professionals, such as front-line healthcare staff, clinical and non-clinical health professionals, support staff and more. The design of the course presents valuable scenarios illustrating the correlation between communication of the condition by the healthcare provider and ability of the patient to successfully understand and support long-term care. The course contains four separate videos, each targeting a risk-factor of health literacy: health center distractions, use of medical terminology, speaking to young clients, and communicating over the phone. In each video the learner is first presented with a realistic, although unsuccessful interaction between a health professional and patient, and then is shown how the situation could be handled differently with greater opportunity for understanding and successful treatment of the patient. "This course allows healthcare professionals to see themselves as a vital component of the health literacy process-it's this type of self-awareness that will help lead to more comprehensive and successful care," stated Sara Voit, Director of Learning, ARMS, Inc.
"We are thrilled to have been selected for this award," stated Jill Cobrin, President & CEO, ARMS, Inc. "Health literacy is vital to the delivery of effective and quality healthcare. Knowledgeable patients are better able to make more informed decisions regarding their healthcare, thus achieving better outcomes. As a risk management service organization, ARMS views health literacy as a vital component to the healthcare industry. As a result, ARMS created this Health Literacy e-learning course in order to teach and review, as well as to enhance clinicians' awareness and comprehension regarding health literacy."
Feel Your Best: Patient Education Brochures
Lori Hall, RN, Health Education Consultant,
Lilly USA, LLC
Available in English and Spanish, the "Feel Your Best" patient brochure series by Lilly USA, LLC, provides patients with easy to read, easy to understand information about "Eating to Feel Your Best" and "Being Active to Feel Your Best." Brochures were designed for people of all of ages, races and educational levels. Using colorful pictures, direct information, simple illustrations, short bullets, quick tips and space for personalized notes, readers are inspired, directed and motivated to take action to feel their best. Lilly's Health Education department is dedicated to empowering patient care through delivering a broad portfolio of non-product-branded health resources. "By providing the foundational knowledge and skills that create an informed patient, our resources are designed to engage, educate, and empower participants to be active in the management of their health care." said Lori Hall, RN, Health Education Consultant, Lilly USA, LLC. "Like many healthcare organizations, we have been on a journey to learn as much as we can about health literacy and it became time to translate that knowledge into practice. So we put a lot of thought and consideration into how we could develop a very 'patient-centric' series of brochures that fully embrace the use of health literacy principles, yet were still engaging and visually appealing. By starting with the building blocks of good health--eating well and being active --and writing in plain, 'living room' language, the hope is these brochures will help to reduce health disparities and start to improve health communication between patients, providers and payers."
To view additional award submission and photos from the luncheon, click here.
2012 Health Literacy Hero Award
Presented to Ms. Janet Ohene-Frempong
Social Media and Usability of the Message
Michelle Samplin-Salgado, MPH
||Social Media-it's changed the way we communicate and do business. In her presentation, Michelle Samplin-Salgado, MPH, of John Snow, Inc., provides some interesting statistics regarding social media:|
These statistics certainly speak to the way patients are receiving information.and sharing it with others. Imagine a positive story in which patients praise a hospital for responding promptly, accurately and respectfully. What impression would that story leave with you? Now, imagine a story about a consumer who wasn't treated fairly. How would you feel about an organization that did that? And how quickly would you share that with others?
- 29% of e-patients have contributed content
- 60% of e-patients consume social media
- Mobile media is a game changer-nearly 49% of Blacks and Latinos own a smart phone
What does this all mean to health literacy? A lot!! Patients know what patients want to know. It's your job to manage what they see and hear. As a healthcare provider, you need to develop timely and relevant information that creates attention, provides assessment and tells audience to take action.
Even more important-you must listen. The art of listening is a powerful thing, especially for healthcare providers and organizations. Salgado challenges the audience to listen, learn, adapt and repeat.
What will the result be? Who knows? You may learn something you didn't know; change your opinion; get more involved; create more understanding, develop new relationships, etc. The possibilities are endless and so are the results. The way we communicate is changing-get started by listening today.
- Sign up for Twitter
- Start following 10 people
- Find people similar to you
- Make a date with Twitter once a day for 7 minutes
Numeracy, Risk, and Health Decisions
Ellen Peters, Ph.D.
Numeracy represents some very critical barriers. Some are systemic in that information can be inconsistent, changing, uncertain, and insufficient. Others come from the communicator. As communicators, we tend to do the following:
||Dr. Peters focuses on how we process information and how processing makes a difference to how we make choices. She pointed out that numbers are ubiquitous in health, from getting to appointments on time to understanding the risks of mammography. Peters offered the following processing sequence:|
- Info needs to be available, accurate and timely
- Must comprehend it
- Must determine meaningful differences
- Weight factors to match needs and values
- Make tradeoffs
This tends to be especially true when the information is familiar to us. Instead, she says, we need good models of what our patients know. And until we check in, we can't know. Finally, there are barriers that are consumer-related including the following:
- Overestimate what other people know
- Default to our own models-i.e. to what we know, then we adjust, but insufficiently
In addition, people who understand numbers process numbers differently. They tend look at and focus on numeric information longer and draw more meaning from it. Less numerate people draw more meaning from narratives and rely on non-numeric sources of information to make decisions.
- As we age, our numeracy tends to decline
- Females score lower than males
- With patient-centered decision-making, people are getting a lot more numbers
- Combination of this policy shift combined with lower health literacy may mean increase in health disparities
Peters offered a number of practical suggestions for helping less numerate people.
Peters also offered information about how to present information graphically. First, ask what is the goal of my communication? If you want to show a trend, as opposed to something static, a line graph is effective. She recommended pictographs for percentages, like the number of people who suffer side effects, for example.
- Framing of information is important for people who don't focus on numbers as much.
- Numerate people can draw affective meaning from numbers; for others, we need to use affective labels. "Low" risk is an example of an affective label.
- Choose what you want to present. Do you want to risk influencing people, do you want them to ignore risk, or do you want them to pay attention to risk?
- Less is more. Peters emphasized the importance of this with an example of a study that offered statistics about hospital safety. The group that was offered less information more reliably chose the safer hospital. The lesson learned is to delete less relevant information.
Timing of the information matters. Peters used the example of a patient on the table at risk of heart attack. At that moment, told of his risk of dying on the table, the patient might want to leave, even though his risk of dying if he didn't have surgery was greater. In this situation, one statistic might not be enough. Comparison was important to the story. In addition, there aren't a lot of cognition resources left if the patient is under stress.
2012 Poster Submissions and Video Segments
As part of IHA's initiative to improve health literacy, we asked attendees from our conference to share their work with their conference attendee peers in our evening poster session presentation. Posters were categorized in six key areas: collaborations, educating professionals, patient education, plain language, public health and technology.
"One of our health literacy conference goals is to provide peer-to-peer learning opportunities said IHA's Chief Operating Officer, Michael Villaire. In doing so, we found that conference attendees could share best practices, act as sounding boards for each other and establish long-lasting professional relationships."
To view the list of posters by category and see video clips from many of the presenters, please click here.
| ||© 2013, IHA Institute for Healthcare Advancement. All rights reserved.|