Mode of engagement
Definition
Examples
Communication
Support for patient-to-patient, computer-to-patient and patient-to-provider communication or information dissemination
Patient portals
Patient-physician secure email
Online support groups
Social networking sites
Data storage
A patient-centered and managed repository for patient-entered data
Personal health records
Data portals for home monitoring devices
Behavior management
Tools to support personal health goals, often by combining data storage, care protocols, information dissemination, and communication
Weight management tools
Physical activity tools
Medication reminder systems
Decision support
Tools to prepare patients to participate in ‘close call’ decisions that involve weighing benefits, harms, and uncertainty
Interactive tools for treatment decisions for Breast Ca, Prostate Ca, Back Pain, End of Life, Heart Disease
For example, a person interested in learning about multiple sclerosis (MS) could find structured background information at a Web site like Healthline.com (Healthline Multiple Sclerosis). The first steps would be viewing the section on Learning the Basics, which would cover symptoms, vocabulary, causes, risk factors, tests and diagnoses, and complications of the disease. The use of video, graphics, simple language and a clear organization can help users successfully navigate these sites and help them obtain the information they need. Further sections on treatment options, finding a doctor, advice on managing the condition, and links to ongoing clinical trials become important for those diagnosed with MS. Many health Web sites with disease specific information also offer online support groups. Continuing with the Healthline.com example for MS, there are several ways in which patients can reach out to one another online. The site offers a location where patients can rate their therapies and share results, a place to load and share video testimonials, a place to share tips for living with MS, a set of MS patients’ blogs, and also an online support group that links to Facebook. Some organizations offer online support groups with expert moderators, such as WebMD’s MS Community. Both types of services serve important functions. Much of the care for chronic conditions, such as MS, occurs at home and has to do with managing symptoms and adhering to treatment goals. Oftentimes, other patients who have long-term experience with a condition can be most helpful. Additionally, the health benefits of social support from patients in the same situation can be very powerful (Umberson and Montez 2010). Researchers have found improved quality-of-life outcomes not only for patients enrolled in face-to-face support groups for diagnoses like breast cancer (Würtzen et al. 2013), but also for online patient support groups (Klemm et al. 2003). The social support provided by patients with similar issues can serve to provide empathy and encouragement in a way that is difficult for clinicians or even family members. Additionally, patients who have already learned to cope with self-management challenges can offer just-in-time information to patients struggling to cope. An online venue makes these connections more accessible and convenient. Additionally, the anonymity encourages a more honest and open dialogue (Hsuing 2000). It is important that the computer interface design of the online systems facilitate these important features for patients. Representative interface design issues include clearly communicating the level of privacy and security of the data being shared, and helping the consumer in distinguishing advertising from legitimate health information.
Other examples of consumer health applications include personal health records, decision support tools and health behavior change systems. Personal health records offer users a mechanism to store and retrieve their health information. Those that are linked to specific health systems often additionally offer secure patient-physician email, appointment setting, and medication renewals. Decision support tools for patients have run the gamut from early interactive video systems designed to integrate patient preferences on potential health outcomes into medical treatment decisions such as prostate or breast cancer treatments to Web-based systems that led patients through background material and assessments for tailored feedback on their health care decisions (O’Connor et al. 1999). Finally, systems that offer monitoring and performance feedback (i.e., Fitbit.com for activity monitoring or Beddit.com for sleep monitoring) can be clustered in Table 12.1 under Health Behavior Change systems. User feedback from the monitoring itself has been shown to influence behavior change (Bravata et al. 2007), but for many chronic conditions such as diabetes, asthma and heart failure, it is important to have sophisticated behavior change protocols in consumer systems that can be facilitated by a coach or nurse care manager (Demiris et al. 2008). Changing health behaviors is challenging, and user interface design for the necessary prompts and reminders becomes critical to the success of these systems.
Consumer health applications may be implemented on a variety of platforms using Web/Internet technology, desktop computer applications, touch screen kiosks, cell phones, smart watches, or combinations of the above. The human computer interaction implications of deploying these types of health interventions on varying display devices with varying types of consumers generates many challenges for designers. The subsequent sections further elucidate these challenges and offer potential design guidance.
12.1.2 Needs Assessment as Part of Interface Design for Consumers
Interface design for a new health information technology must originate with a careful needs assessment and understanding of goals and tasks to be performed. In the case of designing a system for consumers, it is important to anticipate whether the intended users will be from varying age ranges, different cultures, and different education levels. It is important to determine whether there will be separate systems for use by specific groups or whether the interface and content need to be adapted to the type of user (See Chap. 7, this volume, for a more detailed description). Needs assessment techniques such as focus groups and interviews with stakeholders can provide feedback to inform these design choices. An example of an iterative needs assessment is described in Jimison’s study on multimedia tools for informed consent (Jimison et al. 1998). The initial challenge was to address the needs of patients with decisional capacity but varying forms of cognitive impairment. Standard consent materials were often written at above the college level when considering trials with complex protocols. The researchers selected consent procedures associated with trials for patients with schizophrenia, depression, and newly diagnosed patients with breast cancer. Design specifications for a tool to help patients decide whether or not to volunteer for a trial were developed with input from a series of focus groups with representative patients with experience in these types of trials. The resulting prototype was then tested again as stimulus material with similar focus groups, followed by usability testing of a following iteration and then a trial comparing paper consents to the multimedia decision aid. Breast cancer patients were found to be the most decisionally impaired, wanting almost uniformly to defer to their doctor. Patients with schizophrenia were better able to focus with a tool that kept the amount of material on any one screen minimal and let patients browse for further information, then bring them back to the main points. A needs assessment with users, encouraging participatory design, is helpful, especially for rapidly changing technologies.
12.2 How Culture Influences Design Choices
Culture is an umbrella term used to refer to a multi-layered construct influenced by language, education, societal rules and religion (The Providers Guide to Quality and Culture; McCrickard et al. 2012). Designing user interfaces for people with different cultural and health beliefs requires adapting and incorporating a variety of factors. People from different countries/cultures use interfaces in different ways, prefer different graphical layouts and have different expectations in how the health technology interacts (McCrickard et al. 2012). Therefore, user interfaces should be designed to accommodate the cultural differences of the target end users to provide an optimum user experience (McCrickard et al. 2012). If you have ever tried to assemble furniture produced in another country using instructions roughly translated to your language, you probably have a sense of the frustration or confusion non-native consumers have when using health information systems that have been crudely adapted to their language using word-by-word translations instead of looking for the cultural meaning to convey. The success of a consumer health intervention in a new culture critically depends on careful and meaningful message adaptation. Additionally, visuals containing graphics with colors may seem to have an agreed upon interpretation for many people in the United States with common experiences, but quite different when shown to immigrant populations or subgroups with a nonstandard exposure to the media.
As an example of the benefits of user testing of health content, the Los Angeles Cancer Education Project conducted a learner verification of a number of national and local publications with potential users from the Hispanic community (Briceno and Killam). The materials were found to be unsuitable “because they dealt with facts rather than with people and their concerns,” meaning that the patients’ emotional responses were felt to be more salient and of concern than finding out medical facts about cancer. The feedback from this resulted in a new publication based on one extended family’s experiences with cancer: Hablaremos Sobre Cancer de la Familia (Let’s Talk About Cancer Among the Family) (Briceno and Killam). This became the centerpiece for a comprehensive community effort to detect early cancer. Family participation for cancer detection was more culturally appropriate than individual participation. Culture involves common beliefs, values, traditions, lifestyle, communication, region, and the way you look at the world. Another interesting location requiring multiple styles of communication and influencing interface design occurs in the Hawaiian Islands. There are several ethnic subcultures there, including Hawaiian, Portuguese, Chinese, Japanese, Korean, Caucasian, Filipino, Vietnamese, Samoan, and other Pacific Island ethnic groups, often identified as native Hawaiian. Each group, on average, has different cultural expectations for communication styles and this influences how best to use (or not use) technology to communicate health messages (e.g., screening for cancer or appointments) (Evercare; Goebert et al. 2007). Chinese and Caucasian cultures tend to prefer a more direct style, Japanese a more formal style, and native Hawaiians a more indirect approach that first addresses social needs. It is important for designers of health technology tools to consider communication styles as part of the human computer interaction design process.
12.2.1 Designing for Populations with Health Disparities
There are several subpopulations in the United States who are predisposed to worse health outcomes than other groups. For example, African Americans when compared to non-Hispanic white Americans, have higher rates of obesity, hypertension, cardiovascular disease and are disproportionately affected by increased rates of HIV, especially among African American women (Braveman et al. 2005). Similarly, Hispanic populations also have worse health outcomes when compared to whites. Latino and Hispanic populations have higher incidences of diabetes, hypertension and obesity in addition to double the amount of cervical cancer among Latino/Hispanic women (Braveman et al. 2005).
When designing user interfaces for these groups, there are several key considerations to address (Reinecke and Gajos 2011). Disparities in education and income levels are intertwined with health disparities. Approximately 16 % of African Americans and Hispanics live below the federal poverty line. 37.7 % of Hispanics and 16.1 % of African Americans aged 25 and older did not complete high school (Braveman et al. 2005). Additionally, studies have shown that design technologies for African American youth should also be “cool” (Reinecke and Gajos 2011). This includes interfaces that are “rebellious, authentic, rich and innovative” (Reinecke and Gajos 2011). For many populations, studies show interfaces that contain culturally appropriate content are more effective than solely language translations (Chang and Yu 2012; Kreuter and McClure 2004). It is important that design be able to bridge digital divides and embrace disenfranchised populations or those who are medically underserved.
12.2.2 Access Issues and the Digital Divide
The access to technology for consumer health information and patient-facing interventions has presented a challenge to researchers, policy makers and clinicians with an interest in the equitable delivery of care. Populations who most need health information often lack the means, knowledge, and skills necessary to benefit from Internet health resources (Smith and Zickhur 2012). In a recent Pew Internet and American Life Project, they found that more than one quarter of U.S. adults had no online presence, and many Americans used a slow-speed Internet connection (Smith and Zickhur 2012). Non-users were more likely to be poor, less educated, over the age of 65, disabled, members of ethnic minorities, and nonnative English speakers (Smith and Zickhur 2012). This lack of access to health information and management tools has direct implications on general access to health care services, as more and more care will be provided with the use of Internet technologies.
The design choices that developers of consumer health informatics systems make with regard to media and format have a direct impact on the degree of use by populations of interest. Access by definition affects degree of use. Even though conventional access to health information through more traditional Web interfaces on desktop computers may have less use in minority populations, a design choice to use mobile phones to communicate may actually increase use above the norm in targeted populations. Many developers are surprised to learn that according to a recent Nielsen study of smartphone sales, it was found that White consumers were less likely than Blacks, Asians or Hispanics to have a smartphone (Nielsen Report). In fact, only 42 % of White consumers purchasing a mobile phone chose a smartphone over a feature phone, whereas the percentage choosing a smartphone was higher for minority populations (44 % for African Americans, 56 % for Hispanics, and 60 % for Asian and Pacific Islanders).
12.3 Design Considerations According to Age
The population of older adults in the U.S. is increasing dramatically. In 2010, there were 40 million people age 65 and older, accounting for 13 % of the total U.S. population. The Older Americans report of 2012 projects an increase of 32 million people in this segment by the year 2030 (20 % of total U.S. population) (Older Americans 2012). In parallel to this trend is the projected increase in healthcare expenditures for older adults. According to the Centers for Disease Control, Medicare spending has grown in the past 25 years, increasing from $37 billion to $336 billion, a trend that is expected to continue due to the increases in aging populations (Healthy Aging Improving and Extending Quality of Life Among Older Americans).
Empowering patients will apply to all ages, but age must be taken into account in addition to all other user characteristics in order to optimize the user experience with consumer health technologies. There are age-related declines in several cognitive and sensory-motor skills. For example, psychomotor skills such as dexterity and hand–eye coordination decline with age and these limitations can make it more challenging for older users to learn to use a keyboard or control a mouse device (Hedden and Gabrieli 2004). Age-related declines in working memory and divided attention have very direct implications for interface design (Fisk et al. 2009). Interface content must be much simpler and less cluttered to allow older users to attend to pertinent material. Rogers and Fisk have found that older adults are limited in their ability to develop automated responses (Rogers and Fisk 1991), which also has implications for needing to keep interface designs simple and easy to learn. Further, it is important to minimize tasks that might maintain a high cognitive load over time without the development of an automated response. Although there are several types of age-related declines, and many are quite severe with the onset of various pathologies, such as dementia, healthy older adults are quite adaptive in compensating and can continue to perform interactive tasks with technology quite successfully (Rogers and Fisk 1991).
An equally important aspect of the design is matching the communication style of the interface to that of the users, as vocabulary changes over time. The communication styles vary significantly across generations and ages, but are very important in creating trust and acceptance on the part of the users. The rapid evolution of communication styles is greatly influenced by the advances in communication technology including email, short message service (SMS) and various social media. Even adults in their 30s and 40s have a hard time keeping up with the new tech lingo of the next generation. Language is dynamic and technology content must match the vocabulary of the targeted audience.
The matching of communication styles is not limited to the textual information, but rather generalizes to all modalities. In particular, audio and pictorial representation as well as icon-based systems must be adjusted in accordance with the expected age and style of the users. Figure 12.1 shows a simple example of various choices of icons to represent a phone call. The icon on the left is recognizable to older adults, however, most young people will never have seen a dial phone, or perhaps even a land line. Additionally, with the advent of smartphones, physical keypads on a cell phone may not look familiar to some.
Fig. 12.1
Examples of phone icons, showing how the choice of a visual icon may be different for different age groups (Courtesy dreamstime.com)
Given the effectiveness of video-based communication as demonstrated by YouTube and similar sites, it is expected that this style of information communication will find increasing applicability in the domain of consumer health informatics. Much like the text-based communication, these video-based approaches are likely to comprise a wide range of styles, ranging from cartoon animation, to interactive avatars and human actors.
In summary, the dynamics of the cognitive and sensory-motor skills combined with the heterogeneity in users’ knowledge present significant challenges to the developers of interactive systems. Although consumer health information technology has the potential to empower patients to become more active in the care process, the elderly may be disadvantaged unless the designers of both software and hardware technology consider their needs explicitly (Fisk et al. 2009). The mitigation of these challenges in designing for consumer health technologies across ages and skill levels will be addressed in the section on the Future of Human Computer Interaction for Consumer Health. Despite the concerns addressed in this section, there is evidence suggesting older adults are connecting with technology more than ever before. According to a GE market research report, of the more than 53 % of older adults who use the Internet or email, 70 % report using the Internet regularly. However, a majority of older adults preferred simpler technology with fewer features (Care Innovations).
12.3.1 Additional Design Considerations Based on Chronic Conditions
If designed appropriately, health technology interventions for older adults could contain the costs burden on the healthcare system while simultaneously improving health outcomes for this population. Older populations also experience higher incidences of chronic conditions, and many of these conditions affect a user’s ability to interact successfully with health information technology unless specific adaptations are in place. For example, approximately a third of adults between ages 65 and 74 have hearing loss, and most people notice visual problems around the age of 40 (Care Innovations). Having adaptable visual and auditory interfaces as options for technology addresses much of the problem. For example, varying font size and contrast options can often address the needs of individuals with mild to medium vision impairment. Common tools with many computers include auditory feedback and screen magnifying software. There are also several software packages for screen reading, converting text to speech. The American Foundation for the Blind provides a review of 18 such systems (American Foundation for the Blind). An additional visual factor related to designing consumer health systems is that about 8 % of the population (mostly males) has a form of color blindness, and confuse either red and green and/or blue and green. The implication here is that interfaces should not rely on just color to convey information.
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