Session A: Creating a Needs-Based Health Literacy Initiative

From left to right: Stanton Hudson, MA, and Nick Butler, MA

From left to right: Stanton Hudson, MA, and Nick Butler, MA

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.

Session B: What’s in a Word? The Translation of Information and the Client/Translator Relationship

Wilma Alvarado-Little, MA, MSW

Wilma Alvarado-Little, MA, MSW

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.


Session D: Easy-to-Understand Informed Consent and Advance Care Planning

Rebecca Sudore, MD

Rebecca Sudore, MD

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:

  1. Plain language (< 8th grade; 4th-6th grade if possible)
  2. Form in patient’s native language
  3. 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.


Session E: Tweets for Engagement and Health Messaging

Alisa Hughley, MPH and RV Rikard, PhD

From left to right: Alisa Hughley, MPH and RV Rikard, PhD

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, 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).

They offered several online resources, such as and