Panel Discussion: Usability

Publication Details

Meredith Weaver, PhD, ScM, CGC, University of Maryland School of Medicine, introduced the panel on usability of genetics information, moderated by Alejandra Gepp, MA, National Council of La Raza: 1) Paula Raimondo, MLS, Health Sciences and Human Services Library, University of Maryland; 2) Therese Ingram Nissen, MA, NCHPEG; 3) Mark Boguski, MD, PhD, Harvard Medical School/Beth Israel Deaconess. Weaver echoed that patients often need to emotionally process a diagnosis before they can absorb new information and act accordingly.

How People Interact with Information

While all patients need to process information about their diagnosis emotionally, many patients may be at a disadvantage if they have low health literacy, according to Paula Raimondo. She cautioned about the danger of a healthcare provider overestimating a newly diagnosed patient’s ability to understand medical information. It is the provider’s responsibility not only to appreciate the psychological process by which a patient apprehends his or her diagnosis, but also to assess the patient’s health literacy.

Even average literacy is generally insufficient to understand medical materials. For example, while the average adult reads at an 8th-grade level, most health-related materials are written at a high school level or higher, meaning they are too difficult for the average adult to comprehend. Health-related materials written at the high school level are entirely out of the reach of the 20% of the population who read at a 5th-grade level or below.

The lack of health literacy in the population has medical consequences. Illiterate or barely literate adults have coping mechanisms for navigating in a literate world. It may not be obvious that a patient cannot understand a brochure written at a high school level. Illiterate patients may feel stigmatized and be unwilling to confide that they cannot read what the doctor or receptionist hands them. Such patients, who are mostly older, immigrant, and non-white, are “less likely to seek help early, complete forms correctly, follow medical regimens, keep appointments,” Raimondo said. As a result, their disorder may progress more rapidly and further than it would in a highly literate patient who is able to engage in chronic disease management at an early stage.

Taking into account a patient’s health literacy is one more layer of complexity in the process of communicating a healthcare “road map” to the newly diagnosed patient.

Developing Web Pages

To design a user-friendly website for patients, Therese Ingram Nissen recommended seeking consumer feedback at the beginning of the design process. “Involve your audience early and often” was the main theme of her guidelines for effective Web design, a message that is particularly apt for patient advocacy websites.

Good Web design does not start with the designer but with the users. Nissen advised that developers first determine the basic criteria for the site, relying partly on information gathered by interviewing potential users, caregivers, and health experts. Then go back to them with a preliminary design and ask for feedback. The goal is to create a “scenario of use.” The best websites will create profiles of users so that the site can be easily customized by user type; patients have different needs than physicians. Caregivers have unique needs when they are searching online for information and support. Nissen echoed what other speakers said about the Web: it has been user-driven, and now it is increasingly user-created. High-quality Web design involves an active investigation into how consumers use the information they find in their everyday life.

She outlined some specific details to bear in mind when creating a new website.

  • Users read online material 25% slower than they read a book, so present only about half the content you might present in a brochure.
  • Users read online content in an “F” pattern: they look at the heading (the top line of the F), then glance at the subheading (the smaller line), and may go on to read the first two sentences. Use this structure to organize information so that users can navigate easily, quickly finding what they need or moving on to a page that is more relevant. Break up the text with bullets, and use graphics, tables, and even white space to provide a comfortable and efficient display.

Web design today, according to Nissen, is not so much about technology as it is about how people process information. This is Web 3.0.

Social media and disseminating Information about genetics

While other speakers described the ways in which human knowledge and technology are increasingly dovetailing, Mark Boguski pointed out several incongruities that persist, which contribute to the “digital divide” we live in today.

According to Pew Internet surveys, 160 million people use the Internet for health information, but many do not disclose this fact to their healthcare providers. The Internet clearly satisfies a patient need, but leads to a doctor-patient relationship that is not based on clear and open communication.

Those who use the Internet for health information may not be using it as effectively as possible. Something as simple as taking notes may make a person less efficient at Web-browsing. “Most people using Google still use pencil and paper to notate things about websites” instead of switching back and forth between the website and the computer’s notepad to make notes directly in a document.

Boguski described a new online medical search environment, resoundinghealth.com, designed to enhance the experience of seeking health information on the Web. “Casebook,” for example, allows users to put aside pencil and paper and type notes online in a pdf. Resoundinghealth.com aims to “store, organize, and share personalized results of online searches” as efficiently as possible.

Boguski also detailed steps for using social media to disseminate medical information. A “patient with a textbook symptom is an opportunity to take textbook information and put a face on it.” But this face cannot be static—it needs to emerge through “dynamic and socially-constructed interactions.” How is this done?

  • Social media must first gain users’ attention. One example of a site with a good “hook” is celebritydiagnosis.com. The blog features celebrities’ health issues and provides links to information about the diseases that are mentioned.
  • To keep users’ attention, the site’s material should be engaging.
  • The site should provide “learning guidance,” a similar concept to the “road map” described earlier.
  • Users should have the ability to rate different parts of the site and provide feedback.
  • The site’s presentation should enhance information retention and encourage users to go deeper into the material.

Websites that provide information to healthcare consumers have a responsibility to educate, not just inform, those consumers

Discussion

Moderated by Alejandra Gepp

Processing Information

Presenting information to a newly diagnosed patient is a complicated process, involving players whose needs and wants are often at odds. “It’s about how much your client needs/wants to know.” On one hand is a doctor, with her set of experiences and education, building a road map based on the needs and symptoms of the patient, offering answers to questions that the patient needs to know. On the other hand is the patient, processing a diagnosis emotionally, with a set of information that he wants to know (or explicitly does not want to know). Bergner fully elaborated this concept in her comments about the two types of grieving that different patients experience.

The Digital Divide

There are many types of literacy at play in understanding health information. General literacy is an important factor, but one audience member noted the difference between general literacy and health literacy, and digital literacy is yet another factor. Speakers described health-illiterate patients with low general literacy or a lack of computer skills. The participant countered that his father is highly literate, but nonetheless has trouble understanding genetics articles.

Similarly, participants commented that hyperlinks are useful for people who are highly computer literate, but useless for people who read on the Web as if they were reading a brochure. For these users, printable versions should be available in a way that preserves the hyperlinked information.

The need to communicate with all members of a community affected by a genetic disorder requires using a variety of tactics. We cannot “leave behind a subset of the population.” In general, Gepp concluded, when “designing educational materials or in communicating information, I suggest using a combination of print and Web-based formats.”