Chapter 16: Effective Online Information for Low-Literate Patients: Going Beyond the Written Word

Doctors have to learn not only how to talk to patients with limited literacy, they will also need to acquire a new set of digital literacy competencies in order to be able to communicate with the new generation of young adults who live half their lives in front of a computer screen. This can be extremely challenging for the older generation of doctors, some of whom even have difficulty typing.

The easy availability of free health information online represents both a boon and a bane. One danger is that it contributes to the digital divide, which means that poor people (who usually also have poor literacy skills) find it much harder to access this information because they do not have easy access to the Internet. However, we now have a chance to leapfrog traditional barriers and deliver high quality health information to billions of people, if we learn to use the technology cleverly. The Internet is a great means of reaching out to patients with low literacy, simply because its a graphic medium that does not merely rely on text to convey information.

The good news is that users with limited literacy skills are willing to use the Web to access health information; and are successful in accomplishing their tasks when Web sites are designed well. However, websites are usually designed for sophisticated users, who are often affluent and educated. Thus Web sites that are not well designed can prove to be a major hurdle for low literacy patients. The irony is that its not the users limited literacy skills but the limited ability of the designer to create a user-friendly website which causes the problem.

The major problem is that because there is no much garbage online, patients with limited literacy skills find it hard to determine which information is reliable and which is not. Patients get lost and confused and this ends up frustrating the doctor as well.

The solution to this is simple - every doctor needs to publish his own website. By providing this information, a doctor is able to establish himself as a credible expert. Patients trust their doctors, and would rather rely on the information that he provides, rather than having to search for it on Google. It does involve some effort on the part of the doctor, but this a worthwhile investment. The beauty is that once you have created online content, you can use it many times, for many patients, over many years. "Create once, use multiple times" is very cost-effective. You can "refer" patients to your website at the end of a consultation, so patients can educate themselves. Patients appreciate this and this kind of positive word of mouth will help you to get more patients.

Doctors will have to adapt by learning new skills. Doctors have to learn not only how to talk to patients with limited literacy, they will also need to acquire a new set of digital literacy competencies in order to be able to communicate with the new generation of young adults who live half their lives in front of a computer screen. This can be extremely challenging for the older generation of doctors, some of whom even have difficulty typing. However, this is a great opportunity for technologically savvy doctors, because it enables them to reach out beyond the four walls of their clinic, to millions of people who are looking for health information online.

Simple navigation and clearly-defined content can help adults with limited literacy skills find, understand, and use health information on a Web site. The US Department of Health and Human Services has developed a guide for creating health-related websites for people with limited literacy skills. The strategies are very likely to improve the experience of everyone who uses the Internet, even those with high literacy skills, in much the same way that people appreciate appropriately designed print materials, regardless of their literacy level.

Their goal is to deliver messages that are actionable and engaging. The user interface can be improved by paying attention to the following aspects:

• Appropriate use of illustration and photography. While photos may grab attention, research shows that they have many distracting details and may not resonate well with low-literate viewers. Simple line drawings and stick figures may often be more effective at communicating the message. Pictographs are well accepted by low-literate patients.
• Careful use of captions that explain each action step, thus maximising the effectiveness of the visuals.
• "Chunking" of healthcare information into groups to enhance comprehension.
• Making appropriate use of audio. While audio is highly favoured by low-literate patients, they may have trouble starting and stopping the audio or adjusting the volume. Users may need your help with these features.
• Simpler the better. Fewer colours, a single font type and size, and limited content enhance learning and comprehension among low-literate users. Usability testing observes patients using the website to discover errors and areas of improvement. It involves measuring how well test subjects respond in four areas: efficiency, accuracy, recall, and emotional response. The results of the first test can be treated as a baseline or control measurement. All subsequent tests can then be compared to the baseline to indicate improvement.
• Efficiency - How much time, and how many steps, are required for people to complete basic tasks? (For example, to find the causes for hypertension).
• Accuracy -How many mistakes did people make? (Did they get lost? confused?)
• Recall -How much does the person remember afterwards?
• Emotional response - How does the person feel about the tasks completed? Is the person confident, stressed? Would the user recommend this system to a friend?

Usability testing usually involves systematic observation under controlled conditions to determine how well people can use the product. Rather than just showing users a rough draft and asking, "Do you understand this?" usability testing involves watching people trying to use something for its intended purpose. Text layout, readability, use of plain language, illustration quality -all affect how user friendly your site it.

You can use exactly the same principles to evaluate all your patient communication materials. Design is the key, but this is something to which doctors often dont pay enough attention. User-centred design is especially important for patients with disabilities, and universal design endorses the design of products, services, and environments so they are usable by as many people as possible, regardless of age, ability, or circumstance. It suggests that all technologies meant for use by the general public should also be accessible to limited-literacy populations.

The beauty is that paying attention to these basics will enhance the value of your website for all your users. After all, everyone appreciate beautiful design and the success of the iPad is a living example of this. Look at model websites and learn from them.

How do you know if your website meets the needs of people with limited literacy skills? Ask them! The best way to improve the comprehensibility of your website is to involve users with limited literacy skills in ALL stages of website development.

This process is accomplished through three main steps:

1. Test
2. Revise
3. Repeat

The key to iterative design is to continually apply what you learn from users to improve your site. The process of designing an excellent website can be time consuming and costly. It is critical that you do not invest your time and resources only to discover that your users cannot easily find the information, thus requiring you to start the process all over again. To avoid this problem, involve your users from the initial design to the final testing of the site. Be sure you understand your users, who they are and what their goals are before you begin to design your site. For example, are they looking for information for themselves or for a loved one?

You can do this by conducting individual interviews, setting up focus groups with people who have tried the site, and providing specific scenarios or tasks for your users to try out on your site.

A proven formula for presenting actionable health information on a website is the following:

1. Describe the health behaviour
2. Describe the benefits of taking action
3. Provide specific action steps

How is online content different from print?

People who use the Internet are usually looking for an answer to a very specific question, rather than browsing for general information. They usually do not stay very long on a single page (less than 30 seconds). They want to quickly find information on a particular health problem to determine the best course of action. You, as the designer, need to provide this information in a clear, concise and engaging manner.

Otherwise, they will simply "click away" to some other website. As one user said, "Get my attention. Then get to the point."

Keep in mind that just providing information in "plain language" is not enough. You must give people specific action steps that they can take to address the health issue. Instead of just telling them what to do, you must help them learn how to do it. For example, instead of simply saying, "Its important to monitor what you eat and how much you exercise;" say "Keep a daily diary in a notebook of what you eat and what physical activity you do each day."

For more information on how to develop health websites that work for people with limited literacy skills, please download Health Literacy Online: A guide to writing and designing easy-to-use health websites, @https://www.health.gov/healthliteracyonlin e/Web_Guide_Health_Lit_Online.pdf

You can learn a lot by studying the following online resources that make use of the above principles.

HealthFinder, (@https://healthfinder.gov/) the US Department of Health and Human Services website for health information.

Medline Plus (@https://www.medlineplus.gov) provides over 166 interactive tutorials covering various subjects such as Diseases, Tests, and Surgery. The tutorials are self-paced, so that those with low reading skills are not forced to rush through them.

Another great source of easy-to-read health information is the Speaking Books website, @https://www.speakingbooks.com/impact/library.html. It provides a large collection of useful information on a wide range of subjects, some of which are related to health literacy. When you click on one of the books on this site, the corresponding illustrated or cartoon book is opened in YouTube, which enables you to "flip" through its pages as the narrator reads the words to you. One of the benefits of this site is that many of the books are read aloud in over 20 different languages, including those indigenous to Africa and Asia.

If there are videos that may be valuable to your patients but are only available in English or a language that your patients do not understand, you may find Dotsub (@ https://www.dotsub.com) helpful. It enables users to upload videos and then use their tools to create subtitles in many different languages, enabling people in other countries to learn from them.

CARDIO stands for Creating a Real Dialogue in the Office (@https://timetotalkcardio .com/) and is designed to help patients and clinicians build communication skills to help better manage health conditions.