Amy DeMarco, MPA, Institute for Healthcare Advancement
This Train-the-Trainer session lead by Amy DeMarco walked attendees through the process of providing the “Your Health Insurance” training to current or potential clients. This training covered:
- What it means to have it
- What it is and how it works
- What it covers and what it may not cover
- How to use it to stay as healthy as possible
- How to keep it now that you have it
DeMarco introduced some scenarios clients may have faced if they were uninsured and how their new benefits can protect them from high hospital costs or putting off getting care. She then explained common health insurance terms in plain language and asked participants to share how they have explained these terms to clients.
The ten essential health benefits were explained as well as what a typical marketplace plan may not cover. Attendees shared their remedies for covering these gaps in coverage, like taking vision prescriptions to big box stores that can make glasses at a lower rate or adding on dental coverage outside of the marketplace with their new insurer. She shared instructions on where clients can get more information on their benefits, costs, and providers.
The presenter discussed 8 steps clients can take to stay healthy:
- Understand your health coverage.
- Know where to go for care when you are sick
- Find a provider.
- Make an appointment.
- Be prepared for the visit.
- Decide if the provider is right for you.
- Follow the health plan you and your doctor agreed on.
- Take the time to read about your prescription plans.
Lastly, 5 tips to helps consumers keep their health insurance were shared:
- Pay your premium(s) on time.
- Understand your medical bills and pay them on time.
- Tell your marketplace and health insurer about any changes in your contact information.
- Tell your marketplace when you have a life change.
- Renew your coverage.
The session closed with feedback, scenarios, and examples from participants on what strategies they have employed to help clients understand and use their health coverage. Attendees also discussed the different barriers faced throughout the nation in their states and communities and how they have worked to help clients overcome these barriers.
Michael Villaire, MSLM, Institute for Healthcare Advancement
Michael Villaire gave an introduction to the field of health literacy. He began by defining health literacy. His favorite definition is the one from the 2008 Calgary Charter: “Health literacy allows the public and personnel working in all health-related contexts to find, understand, evaluate, communicate, and use information.” Villaire prefers this definition because “it puts the onus for health literacy on the provider, as well as the consumer.”
The healthcare system is bewildering to many people, Villaire said. He gave the example of the challenges people face in signing up for health insurance under the Affordable Care Act. Villaire talked about the components of health literacy: reading and writing, listening and verbal communication, numeracy, and self-efficacy. He gave some illustrations of how challenging numeracy is for many of us.
Villaire talked about the relationship between health literacy and culture. He noted that there is often a mismatch between provider demand and patient skill level, as well as between reading level and materials. And he discussed health literacy’s strong relationship with safety, quality, and health disparities. It can be hard to move an organization forward to health literacy. But “there are certain terms that will help you move forward with your goals. Two words: safety, quality,” Villaire said.
Examples were shared of how patients can be harmed when providers fail to give clear instructions. He put the burden on providers to improve their communication. “The fact that someone does not understand the way we choose to communicate is not their problem. It’s a barrier. It’s something we need to address,” Villaire said. “Health literacy is about dealing with the barriers.”
Villaire discussed health literacy myths and listed the barriers to health literacy. He also offered health literacy statistics and noted that people don’t like to admit they don’t read well because they are ashamed, therefore limited literacy is under-reported. He closed the session by explaining why health literacy matters and discussed the impact of low health literacy.
Cynthia Baur, Ph.D., Centers for Disease Control and Prevention (CDC)
Emergency risk communication is now an everyday part of life for many public health officials. However, scientists, providers, and politicians need to recognize that people not understanding their messages is a risk factor in and of itself. We need to remind our colleagues and managers that they need to make their messaging intuitive, understandable, and relative to their target population.
Emergency events can occur at any moment. Routine issues can also cause emergency events, such as the annual flu outbreak. Other issues, like the Ebola outbreak in Guinea do not seem to pose a risk to other regions, but the health workers returning to their home countries triggered emergency events. Saying that “close contact with bodily fluids puts you at high risk” is extremely difficult to understand and is not actionable for many people. “Bodily fluids” is not an intuitive term.
Crisis and Emergency Event Communication (CERC) training at http://emergency.cdc.gov/cerc/ can help you learn how to communicate effectively during emergencies. The Clear Communication Index is another great tool to identify the most intuitive and direct way to provide a message.
Baur’s main message is that communicating about risk during a crisis or emergency event requires extra attention to clarity. Quantifying risk is very difficult and most people to do not identify with the current low, medium or high risk assessments. Zero risk is not possible and spokespeople may not always be able to give you the exact benefits, consequences, and tradeoffs because they are dealing with gradations of risk.
Specialized communication was initially created for targeted medical professionals who would be managing the Ebola outbreak or dealing with patients. However, as time progressed and diagnoses started to occur in the U.S., the messaging needed to expand to mass communication for multiple audiences.
Types of risk statements:
- Threats or harm to an individual or group of people
- Outcome of a threat or harm
- Factors that make a threat or harm more likely (risk factors)
- Likelihood that a threat or harm will happen
Spokespeople act as if everyone shares the same understanding of risk, but to be health literate we need to understand and tailor messaging to the understanding of risk possessed by the audience. The key characteristics of Crisis and Emergency Events that affect clarity are uncertainty, nature of risk, and timing.
Best Practices from Healthy People 2020 (healthypeople.gov) on what to include in a public health message:
- What’s known
- What’s not known
- How or why
- Action steps
A routine risk that can affect a specific area or population is a food borne outbreak. These can become so routine that people think the risk is smaller than it is. It is up to spokespeople to ensure that the public understand the urgency. The CDC’s Flu Vaccine Campaign is an example of public health messaging that forms urgency in the face of routine risk.
An example of a novel risk and the need for clarity can be found in their Ebola: Getting to Zero campaign. Other emergency events include natural disasters where general messaging on preparation is important, but once they happen there needs to be clear and targeted messages for specific populations. However the key messages of who is affected and how they are affected and what they can do can be carried across different types of messaging.
Dr. Baur’s overarching lessons about clarity in crisis and emergency events are:
- Anticipate and practice before an emergency strikes
- Pre-test and prepare drafts
- Assume emotions, and allow them to guide when and how provide information and what level of detail is required
- Recognize that understanding of risk evolves and people’s initial reaction is not where they stay
- Include action steps
Linda Neuhauser, DrPH, MPH, UC Berkeley School of Public Health
In this presentation, Dr. Neuhauser discussed how the gap between research and practice impacts the success of health literacy initiatives, and offered some strategies for linking the two, as well as examples of successes in this area.
Dr. Neuhauser began by sharing her early experiences trying to give advice to patients. Nobody listened to her science-based advice because they couldn’t relate to it. Her conclusion was that, while we as healthcare providers have messages to send, people have lives to live, and we have to find a way to connect our messages to their lives.
She told the story of how a vaccination program in the West African nation of Mauritania had failed for 20 years. Dr. Neuhauser was sent as part of a medical research team to figure out why. They toured the country, visited villages, talked to the people. Their process was based in design science theory, which focuses on problem solving rather than theory testing. The team was able to solve many of the problems inherent in the program by learning about how the people actually lived and what was important to them.
Finally only one problem remained, how to keep the vaccines cold in the desert heat. It turned out that the camel drivers had the answer: There was a nationwide network of refrigerators for camel vaccines that could easily be used for storing human vaccines as well. The resulting new vaccination program ultimately reached 85% of the population. Dr. Neuhauser’s take-away: Participatory design is key to health programs, and communication is the glue that holds a program together.
She then surveyed the audience and noted that no one present felt that their organization had a high level of adoption of health literacy practices. Most felt that their organization still had a very low level of adoption. This informal survey was representative, according to Dr. Neuhauser: Only 1% of all health literacy research has been translated into action. It has taken 17 years for 14% of the relevant research to make its way into clinical practice; and it takes even longer for these practices to make an impact on the community.
Dr. Neuhauser proposed a new model that differs from the traditional NIH Model of Research Translation, which relies on research and clinical trials for gathering information. Her newer model has researchers working together with practitioners and communities to co-design and evaluate programs.
Dr. Neuhauser then laid out some strategies for putting the newer research-to-practice model in action:
- Set up a research-practice unit in your organization. Such a unit needs researchers that are committed to action as well as practitioners that value evidence. It also needs health literacy and communication experts–and perseverance!
- Use participatory design. Focus on solving problems rather than testing theories. Test the design on users. This is an iterative process, one that was used by the developers of the iPhone and tablets. (As few as six (6) members of the relevant user group can help identify major issues that need to be resolved.)
- Get involved with policy change in your organization, in your community, and through legislation.
She then went on to give a few examples of successful programs built using this approach, including the California First 5 Kit for New Parents and a wellness program for migrant workers in China. Dr. Neuhauser’s work on these and other programs led her to this conclusion: One of the biggest barriers to health communication is that the audience is not motivated to read the information they get. Involving them in the design process helps bring down this barrier.
In closing, Dr. Neuhauser addressed the perpetual question of how to get buy-in from one’s organization for participatory design. Her advice: Nobody likes to fail. Find a [program] failure in your organization and use it as a reason to try a new approach.
Stanton Hudson, MA, & Nick Butler, MA, Center for Health Policy, University of Missouri
Stan Hudson and Nick Butler shared their experiences of working with two very different cities to establish a needs-based health literacy initiative. Hudson and Butler reviewed components to a healthy literacy initiative including being able to identify and engage skill sets around health literacy and competencies, develop strategic partnerships, monitoring, generating feedback, sustainment through implementation science and having health literacy networks.
Hudson and Butler believe that essential tasks and components for a successful health literacy initiative include selecting steering committee members, participating in community outreach and engagement, organizing kick-off events and developing a request for proposal (RFP). They also expressed the importance of phasing the initiative to ensure tasks are focused for the timely completion of objectives. The incorporation of the following phases were part of their initiative in both cities: application procedures, review protocols, and selection criteria.
Hudson and Butler discussed their experience and key activities that took place when developing their initiative. It is important to note that although the initiative was conducted in two different cities the same key activities were completed. Key activities conducted were a needs assessment, resource inventory, curriculum development, partnership development, demo projects and technical assistance.
Wilma Alvarado-Little, MA, MSW, Alvarado-Little Consulting, LLC
Wilma Alvarado-Little began her session with the following question: what is the difference between bilingual, interpreting, and translating? She then followed with a discussion on the importance of understanding each when communicating and marketing. The art of communication is a powerful tool. Alvarado-Little suggests seeking professional services when seeking a translator and/or interpreter expertise in order to ensure quality and consistency.
She recommended approaching the creation of materials with caution as the message could easily be confused depending on the audience. Alvarado-Little spent time discussing cultural competency and how aspects of the community and target population should be integrated into materials creating documents that are sensitive to many perspectives and health literacy.
Alvarado-Little recommended including the following aspects to complete a successful translation project having a clear understanding of the project, making sure to plan ahead, having a final version of the document to be translated and revised for content before submission for translation, and allowing enough time for translation to be completed.
Christopher R. Trudeau, J.D., Thomas M. Cooley Law School.
Summary session coming soon
Rebecca Sudore, MD, University of California, San Francisco
Dr. Sudore is a geriatrician and palliative care physician whose presentation outlined the health literacy issues related to informed consent and advance care planning and presented some lessons learned from creating these forms for patients. She also talked briefly about web design for advance care planning sites.
Dr. Sudore reviewed the basics of creating clear written materials, including use of white space, short sentences, avoiding jargon, grouping information, etc. She talked about design elements, such as use of pictures that improve comprehension. She also talked about various readability testing tools available. She reviewed the components of Informed Consent forms as set out in the AHRQ Toolkit.
Dr. Sudore went over some of the many factors that affect patient understanding of informed consent forms, such as visual or hearing impairment, number of medications, chronic disease burden, etc. She said, “Forms alone do not work, conversations do.” She recommended facing the patient, speaking slowly, and using a “Pocket Talker” when possible. She recommended the use of teach-back in the informed consent process. She also noted that informed consent forms needed to be available in the patient’s primary language and interpreters should be used for teach-back. Her three main guidelines for informed consent were:
- Plain language (< 8th grade; 4th-6th grade if possible)
- Form in patient’s native language
- Interactive teach-to-goal process using open-ended questions to gauge comprehension (only take about 3 minutes)
On the subject of HIPAA forms (and how to get your organization to allow you to change them), she recommended sharing examples of easy-to-read HIPAA forms being used by other healthcare organizations.
Dr. Sudore went on to talk about Advance Directives, “the ultimate informed consent forms.” She showed us the California Advance Health Care Directive form she participated in developing, which is currently available in 10 languages. She talked about how it was developed and how versions for other states are in development as well. She expressed interest in partnering with groups working in more states to develop these forms.
She cited studies of existing advance care directives that had shown that 70% of patients’ documented end-of-life wishes were wrong. In studies where the focus was on discussing the patients’ wishes, there was a 90% consistency of care with the patient’s goals, as well as greater satisfaction for the patient and their surrogate, and increased cost savings and quality of care. The studies showed that, just because someone signs something, it doesn’t mean they understand it, and that it is important to confirm understanding through discussion.
Dr. Sudore recommended that the first step in preparing the advance care directive is to find out what matters most to the patient. Most patients don’t care what the treatment is; they care what the outcome of the treatment will be. Family and religious values are important here, as well as other cultural factors. Visual images and stories make powerful teaching tools in bringing issues and questions to light. Video images and stories improve understanding, increase engagement, decrease decisional conflict, and help identify goals.
She introduced us to the PREPARE website, which her team developed. The team included health literacy, geriatrics and palliative care and behavioural experts, and used 13 separate focus groups for feedback. The team also conducted cognitive interviews with patients. The site uses simple, active language, high-contrast, video instructions for using the site, voice-overs and closed captioning, and lots of videos, many of which model behaviour, demonstrating how to plan for health care. (The site avoids the use of terms like “death” and “end-of-life,” which can be frightening for patients.) She emphasized the importance of pilot testing such a site with the target population, as well as improving it over time.
Dr. Sudore’s presentation was packed with useful insights about the difficulties patients and practitioners face in reaching “informed consent” and strategies for overcoming them. One of the most important take-aways was that written forms, no matter how well designed and written, cannot function to obtain truly informed consent on their own. Visuals, stories, and, most important, discussions with patients and families that include teach-back, are key to truly informed consent and advance care planning.
RV Rikard, PhD, North Carolina State University; Kathleen Hoffman, PhD, MS, MSPH, Medivizor; & Alisa Hughley, MPH, enBloom Media
The three presenters are the hosts of the Health Communication, Health Literacy & Social Science Tweet Chat (@hchlitss, #hchlitss), a weekly Twitter conversation about health literacy. The hchlitss tweet chat is in interview format and features guest “speakers.”
According to Symplur.com, a site that provides analytics for health-related Twitter activity, there are “1 million tweets relating to healthcare each day.” The presenters said that, when used well, Twitter “gives the opportunity to collaborate, connect, and share meaningful professional relationships.” Twitter was also presented as a way to reach the public with health messages. Alisa Hughley pointed out that even people in lower socio-economic groups are likely to have smartphones (possibly the only computer they do own).
The presenters talked about how to use Twitter to help a healthcare organization: Twitter can help drive traffic to your website, and it is an incredible resource for connecting with experts and stakeholder communities. By connecting with others who already have large followings, you can increase your own following.
The participants then broke up into groups and practiced crafting tweets centered around specific health care messages. We discussed some of the tweets participants created, talking about the value of language that is specific, engaging, and uses as few words and characters as possible. We also talked about Twitter “etiquette”: crediting the author when retweeting, etc. We learned that good tweets are those that add value to the community in which you are participating, including citing resources. HIPAA privacy and other standards of confidentiality should always be respected.
The presenters demonstrated a few online tools for tweetchatting, how their own Tweet Chat works, and how to use analytics to gauge one’s effectiveness on Twitter (how many users reached and how engaged they are, for example).
Michael Villaire, MSLM (Moderator), Institute for Healthcare Advancement; Michael Paasche-Orlow, M.D., Boston University; Robert Logan, Ph.D, National Library of Medicine; Winston F. Wong, M.D., M.S,, Kaiser Permanente
Each renowned in their fields, Dr. Michael Paasche-Orlow, Dr. Robert Logan and Dr. Winston F. Wong discussed their perspectives of how health disparities, social determinants of health, and social disparities influence health literacy and overall health outcomes of not only individuals, but communities as well. Health equity is a state that we all want to reach. In order to achieve this vision, health literacy, research and policy elements must be incorporated into intervention strategies.
Health literacy plays a role in the burden of disease and can be used as a tool in prevention. The more competent an organization is in health literacy best practices, the better their outcomes will be. However, health literacy strategies need to go beyond “do you understand” to “what is important to you” as an individual or community. This shift allows us to invest in the influencers that have the capacity to result in better outcomes.
Dr. Paasche-Orlow shared some of his research and provided evidence from a study that initially seemed to identify a racial health disparity in patient outcomes, but upon further investigation found the difference to be attributable to a disparity in health literacy. In this instance and in other areas of his work, a clear link between health literacy and health equity could be drawn. Not all the experts agreed on the directionality of this link, but did support the strong connection between health literacy and health equity.
Incorporating health literacy principles can help eliminate health disparities, and improve how we navigate and communicate within our complex healthcare system. Additional tools can be used to improve access, knowledge and an understanding of health literacy and health equity interventions. The development of an electronic health literacy tool shed was suggested. More research is still needed on health literacy and health equity, but the field is on the right path and further investigation can shed light on this connection and the root causes of health disparities.