1 Introduction

The traditional roles of the patient and provider are being disrupted [42, 56] as the location of healthcare shifts from institutional to home and community based settings [11, 65]. Consequently, engaging lay people in the management of their own and their loved ones’ health is a goal salient to many contemporary healthcare initiatives. The centrality of consumer health information technology (IT) in facilitating patient self-care and self-management has been repeatedly recognized, perhaps most powerfully through the current Health Information Technology for Economic and Clinical Health (HITECH) Act meaningful use initiative [12, 45, 56]. At present, healthcare professionals and organizations must address the goal of engaging patients by providing an electronic copy of their health information upon request. It is expected that Stage 2 of meaningful use will further emphasize patient engagement by requiring secure messaging, and patients’ ability to access, download, and transmit their health information online [16].

To further support and accelerate lay people’s engagement, consumer health IT in myriad forms is being developed to help patients generate, access, store, understand, and share health information. Consumer health IT may be defined as “any electronic tool, technology, or electronic application that is designed to interact directly with consumers, with or without the presence of a health care professional that provides or uses individualized (personal) health information and provides the consumer with individualized assistance, to help the patient better manage their health or health care” ([35], p.1). Examples of consumer health IT include technologies that facilitate knowing, tracking, and understanding clinical parameters and observations of daily living and that facilitate calendaring, health promotion, self-care, and caregiving [35]. Over the past decade the availability and manifestations of consumer health IT have grown with the advent of Web 2.0 and as consumer health IT’s potential has become widely recognized by the government, health care organizations, and large corporations such as Microsoft, Google, and AT&T.

It is imperative that consumer health IT is appropriately designed for lay person use. It is, therefore, timely to expand our consideration of factors likely to influence the appropriate design of consumer health IT. To date designers have primarily focused on aligning consumer health IT with the patient’s health condition (e.g., [6, 15, 47]). This alignment stems from an understanding that there are meaningful differences between illnesses that are likely to make one technology more effective than another for patients with a particular diagnosis. Designers of consumer health IT, however, have only limitedly designed for alignment with other salient dimensions of the patient’s context. In this paper, we argue for the need to attend to another dimension of the patient’s context, culture, and present a framework for facilitating systematic attention to this cultural dimension in the design process.

2 Racial and ethnic healthcare disparities: a national problem

Findings from the 2010 National Healthcare Disparities Report [3] indicate that despite some improvements, fewer than 20 % of healthcare disparities faced by Blacks, American Indians and Alaska Natives, and Hispanics show evidence of narrowing. Among Asians, the figure is only incrementally better at 30 %. These statistics reveal that significant barriers to healthcare equality persist across racial and ethnic groups. There is concern that as the minority population of the United States grows to comprise over 50 % of the population by 2042 [61], the number adversely affected by these disparities will increase.

Despite heightened awareness of these disparities, little consensus exists regarding the causes of these differences. Researchers have attributed the existence of disparities to a broad set of factors including age, sex, personal behavior, social and community influences, living and working conditions, food supplies, access to essential goods, access to medical care, economic conditions, cultural conditions, environmental conditions and racism. Clearly, the causes of health inequalities are multifactorial, interrelated, complex and dynamic [14, 25, 27, 53, 57–60, 62, 74, 76].

3 Culturally-informed healthcare

There has been increasing appreciation that equitable care will not be realized without creating a healthcare delivery system that is responsive to cultural differences. Recognizing that racial and ethnic healthcare disparities persist even when determining factors such as income, access, and insurance status have been accounted for, the Institute of Medicine (IOM) [74] has called, in part, for initiatives to enhance the cultural appropriateness of the healthcare delivery system. The effect of culture on conceptualizations of health-related phenomenon has been repeatedly underscored: studies have highlighted differences in models of etiology [28, 77], the use of life-sustaining technology [10], amniocentesis [67], patient-physician interaction [2], and the role of family and others in the patient’s social network [2, 4, 40]. The IOM’s recommendation has led to an increased interest in the role of culture within the context of the U.S. healthcare delivery system and in the potential of addressing cultural factors as one mechanism for improving health outcomes and reducing healthcare disparities [5, 8, 9, 30, 36, 37]. Empirical evidence is now emerging lending support to this premise [20, 44, 51].

This complex problem of determining how to address the cultural components of racial and ethnic healthcare disparities is an example of what Ackoff [1] terms “messes,” requiring the application of innovative and interdisciplinary solutions. The movement toward better understanding and addressing cultural factors in healthcare is encouraging but limited in scope. To date, work has focused primarily on the role of cross-cultural competency/sensitivity/awareness among providers and healthcare institutions [13, 36, 39, 44] and on cultural tailoring of healthcare processes and public health interventions [17, 18, 49–51, 73, 78]. In the 1990s, Diana Forsythe [31] articulated that health IT is embedded with “hidden cultural assumptions,” illustrating that although designers often believe their creations to be culturally neutral, health IT often embodies cultural assumptions that may not always be appropriate for the intended user. Despite this elucidation, the work of creating a culturally competent/sensitive/aware healthcare delivery system has rarely included health IT, perhaps because of the interdisciplinary and perceived complexity involved in creating such culturally-informed health IT.

4 Culturally-informed consumer health IT

Integrating cultural factors into health IT design is particularly imperative for consumer health IT. The naturalistic settings such as home and community within which consumer health IT is used require special attention to culture for two reasons. First the naturalistic settings for which consumer health IT must be designed are established living spaces within which culture is primarily enacted. Second, consumer health IT depends upon voluntary use by non-paid users. In contrast to paid users in institutional settings, non-paid users in naturalistic settings cannot be coerced into use through institutional incentives or penalties. Thus the environments of consumer health IT use are not only culturally rich, but relatively unmalleable through mechanisms readily available in institutional settings.

Grounding the design of consumer health IT in only the majority culture’s values and beliefs is likely to result in consumer health IT with differential usability and resonance, potentially resulting in differential efficacy and effectiveness across cultures. This may, in turn, lead to differential health outcomes. To prevent such unintended consequences designers of consumer health IT must, therefore, align their technologies with the existing cultural realities of their intended users. By developing culturally-informed consumer health IT based on meaningful, underlying differences between cultures, we may be able to create effective interventions for diverse racial and ethnic groups, which, in turn, may not only prevent an increase of, but also work to reduce, racial and ethnic healthcare disparities.

Recognizing this potential for consumer health IT, the healthcare informatics community is beginning to seriously consider the role of cultural factors in the design of health IT, particularly consumer health IT. In 2001, Kaplan et al. proposed a model of a healthcare informatics research agenda, in which they emphasized that the next generation of high priority research questions should include investigations at the level of culture/cultural anthropology [43]. The authors called, in part, for deeper understanding of how health information should be tailored for diverse cultural groups, how cultural factors affect the use of health IT, and how health IT may be used to mitigate social ills such as racial and ethnic healthcare disparities. A handful of publications [33, 34, 80, 81], including a recent report from the Agency for Healthcare Research and Quality [35], have emphasized the need for such investigation specifically within the subdomain of consumer health IT.

Within academia, preliminary steps have been taken toward culturally-informed consumer health IT design. Comprehensive Health Enhancement Support System (CHESS) investigators, for example, explored differences in how African-American and White breast cancer patients used an online discussion group [63]. This analysis revealed that while African-American women used the tool less often than White women, they used it more instrumentally, focusing on issues such as breast cancer treatment instead of social support. Later work by the CHESS team explored how cultural differences such as the appropriate medium for information exchange may influence African-American women’s use of the technology [71]. Specifically, given the observed patterns of use, the authors speculated about whether or not audio or video communication channels may be more appropriate for African-Americans for social support than text-based channels such as the online discussion group.

The Healthy Harlem study [46, 52, 70] offers another example of how cultural factors have been considered by academics in the design of consumer health IT. In this work, a team of researchers partnered with members of the community to design and implement a health portal to support healthy lifestyles within Harlem [70]. Using community-based participatory research, the team was able to take advantage of local knowledge and ensure that appropriate cultural factors were integrated into the developed technology. Researchers integrated culturally appropriate knowledge related to health behavior, trust, and IT use into the design of their intervention. For example, in response to the distrust that Harlem community members expressed for the medical establishment, Drupal was used as a content management platform to facilitate user participation and collaboration between users and designers [52]. A detailed evaluation of the resulting technology is currently underway.

Government bodies such as the National Library of Medicine (NLM) have also moved toward creating consumer health IT that is responsive to cultural differences. For over 10 years, the NLM has been working with local tribal leaders, beginning with 16 Indian reservations and Alaska Native villages, to assess and enhance information infrastructure and communications capabilities [84]. Similarly, the NLM has created communication tools that are sensitive to language and other cultural differences that invite and reinforce effective use of consumer health IT; these initiatives include the development of the Spanish language Medlineplus.gov/Salud and specialized websites for Native Americans, Pacific Islanders, and other minority groups.

Advances have been made in both academia and the government toward better understanding cultural differences in needs for consumer health IT and applying this knowledge to design practice. However, much work yet remains to be done to expand our understanding and practice of culturally-informed design of consumer health IT. Such work must commence now. The intense national effort to engage consumers in their healthcare through consumer health IT and the severity of the problem of racial and ethnic healthcare disparities require immediate efforts toward designing culturally-informed consumer health IT.

5 Cultural factors in engineering design

Within engineering, there has been a growing understanding that designers must understand and design for the cultural context within which their intended users are embedded. For example, in the 1970s, Chapanis [19] organized a symposium titled “National and Cultural Variables in Human Factors Engineering” during which authors presented papers documenting cultural difference in a range of system elements—from keyboard layout to attitudes toward privacy—and noted the implications for appropriate design. During the past decade, the call for such culturally-informed design has intensified (e.g., [41, 64, 83]). Wilson [83] argues that contextual factors such as culture can no longer be dismissed while Moray [64] asserts that a design cannot be considered user-centered if it does not attend to cultural factors. Kaplan [41] proposes the rise of a new sub discipline, cultural ergonomics, to address this intersection between cultural factors and engineering design. Finally, Moray [64] also makes an emotional appeal in which he asks designers to attend to cultural factors so that all cultures “are not replaced by a pale, or even worse, a bright imitation of western culture” (p.860).

Although there is increasing recognition within engineering design that cultural factors can no longer be ignored, designers have yet to embrace this design dimension in practice. When creating consumer health IT, understanding and integrating cultural factors into design may seem particularly daunting given the many aspects of culture that are likely to be relevant to the creation of an appropriate design. In the remainder of this paper, we present designers with guidance on this front in the form of a framework to reduce ambiguity about where to integrate cultural factors in the design of a consumer health IT.

6 The culturally-informed design framework

The healthcare informatics design community has a history of integrating and building upon knowledge from multiple intellectual communities to advance the field. We have continued this tradition by drawing upon knowledge generated not only within the healthcare informatics community but also within many additional fields including anthropology, human factors, sociology, and public health to create the “Culturally-Informed Design Framework.” We believe that building upon this wide base of knowledge will result in a framework that will serve as a starting point for improving designers’ ability to create effective culturally-informed consumer health IT.

The “Culturally-Informed Design Framework,” shown in Fig. 1, presents four dimensions of a consumer health IT that must be culturally-informed: The choices designers make in these four dimensions are likely to influence the usability, acceptability, and effectiveness of a consumer health IT for a given culture. These areas are: 1) technology platform, 2) functionality, 3) content, and 4) user interface. The technology platform refers to the type of hardware; the functionality refers to the types of actions that may be performed; the content refers to the message being delivered; and, the user interface refers to the presentation and organization of the content and functionality. Admittedly, the boundaries between these four dimensions have not yet been precisely characterized. For simplicity, however, we address each independently.

Fig. 1
figure 1

Culturally-informed design framework

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In the sections that follow we present evidence of the need for culturally-informed design choices within each of these four dimensions of consumer health IT. To help designers put this knowledge into practice, within each of the four cells of the “Culturally-Informed Design Framework” we present sample questions that consumer health IT designers may use throughout the design process. Such questions should be used, for example, during the needs assessment portion of the design process to guide acquisition of cultural knowledge and during the evaluation portion of the design process to ensure that all relevant cultural knowledge has been integrated.

6.1 Technology platform

Evidence from large-scale sociological studies suggest that there may be cultural differences in the type of hardware best suited for a consumer health IT. For example, a 2010 Pew Internet and American Life Project report found that whereas White adults are more likely than Hispanic adults to own a desktop computer and more likely than both Hispanic and African American adults to own a laptop computer, they are less likely to use and access the Internet from other mobile devices such as a cell phone [54]. Similarly, while 47 % of Hispanics, 52 % of Blacks, and 63 % of Whites have a broadband connection at home, 62 % of Hispanics, 59 % of Blacks, and 52 % of Whites have accessed the Internet wirelessly [66]. Furthermore, White online adults are more likely than Hispanic online adults to be daily Internet users [54]. Such differences in Internet usage can remain even when age, income, language, generation, and nativity are held constant [32]. Additionally, the appropriateness of a given technology platform is likely to vary across cultures according to the type of health information management task being performed. This suggests that appropriate hardware design choices for a culture are likely to be contingent upon the purpose of the consumer health IT. For example, although African-Americans are more likely than Whites to agree that the Internet helps them get health information, they are less likely than Whites to agree that it helps their connections to family and friends (maintain social support networks) [75]. These statistics suggest potential differences in both the appropriate Internet-related capabilities and device dependencies for a given consumer health IT.

6.2 Functionality

There is also evidence that suggests cultural difference in the appropriate design of a consumer health IT’s functionality. In domains such as automated banking [24] and mobile technology [21] researchers found that cultural groups did not express uniform requirements for functionality. For example, in contrast to the United States and the United Kingdom, ATM users in India had an extended notion of privacy, preferring that automated banking facilitate money transfer between group members in different geographical areas [24]. Similarly, in contrast to Finnish users, Japanese and Korean users expressed strong preference for the ability to preview content before downloading to mitigate uncertainty [21]. Such cultural differences in functional requirements are also likely to be true for consumer health IT. For example, a wealth of studies within healthcare have shown that key concepts related to consumer health IT design such as privacy and decision-making vary across cultures: patients’ notions of with whom it is appropriate to share health information and who should be involved in and take control of making health decisions is culturally contingent (e.g., [4, 10, 38]). Such evidence suggests potential differences in the types of permissions and actions (e.g., group decision-making, decision-making delegation) that a culturally-informed consumer health IT may need to support. Furthermore, there is evidence of cultural difference in how patients perform similar health management actions. Studies have noted cultural difference in preferences related to how health information is communicated (e.g., voice-based, text-based, face-to-face) between patients [71] and between patients and providers [69]. This suggests potential cultural differences in how a consumer health IT must be designed to support execution of a given task.

6.3 Content

Contributions in multiple disciplines such as marketing (e.g., [48]) and health communication (e.g., [49–51]) have highlighted the importance of culturally tailoring the content of a message. Such cultural tailoring is also essential for consumer health IT design. For example, certain health conditions such as sickle cell anemia and Tay-Sachs disease are biologically prevalent in certain cultural groups and certain health conditions such as susto and nervios, are culturally-bound in understanding [7]. This suggests that there are potential cultural differences in the type of health information that should be made available or emphasized within a consumer health IT. Furthermore, even when one type of health information is salient to diverse cultures, it may need to be framed or explained differently to ensure understanding and traction. Thus, although patients with gastro esophageal reflux disease are uniformly asked to cut their intake of spicy foods, the definition of what is spicy varies significantly across cultural groups and what is considered spicy in one culture may be considered mild or even bland in another. Specific examples that are culturally relevant may need to be included within the consumer health IT to promote desired health outcomes. Finally, some cultural groups mistrust the medical establishment. This mistrust is born of historical events such as Tuskegee Syphilis experiment and is sustained by current practices and persistence of racial and ethnic healthcare disparities [4, 82, 85] Consequently, it is particularly important that consumer health IT designed for individuals identifying with these groups be transparent (i.e., it should be clear who is seeing and using the patient’s information) and contain content that has collaborative, not paternalistic, overtones.

6.4 User interface

That the appropriate user interface for an information technology is culturally dependent has been repeatedly demonstrated in the human factors literature. Lessons learned in this field are applicable to the design of culturally-informed consumer health IT. Multiple studies have shown cultural difference in the appropriate use of linguistic, iconic, and color symbols within a user interface (e.g., [22, 23, 55, 68]). Language is of utmost importance; over 10 million individuals speak English “not well” or “not at all” [79]. Failure to create consumer health IT in languages other than English is likely to alienate a large portion of the patient population. Culturally appropriate use of icons and color is also important. For example, death, a salient concept for consumer health IT focused on end-of-life care, is symbolized by the color white in Indian and Chinese populations, but by the color red in Egyptian populations [68]. Several studies have also shown cultural differences in appropriate navigational structures, particularly between Western and Eastern populations (e.g., [26, 29, 72]). Consequences for consumer health IT may include the cultural differences in menu orientation [26] and appropriate information clustering, for example, between grouping based on functional categories such as diagnoses and medications and grouping based on thematic categories such as body systems.

6.5 Additional considerations

The framework we propose should be useful in helping designers conceptualize the dimensions of a consumer health IT that are likely to require cultural tailoring. It is important to remember that the boundaries between the four dimensions should be considered “fuzzy.” For this reason design choices made in one dimension are likely to influence and constrain the types of design choices that may be made in another dimension. Thus, it is important that this framework be used within an iterative design process to ensure that all dimensions of a consumer health IT are appropriately culturally-informed.

Finally, it is important to recognize that this framework is descriptive rather than prescriptive. It does not provide designers guidelines in the form as “Cultural group X requires Y technology platform.” Such guidelines are premature in light of the current state of scientific knowledge regarding the relationship between cultural factors and appropriate consumer health IT design. Rather, this conceptual paper posits four key dimensions that designers of consumer health IT should attend to as they develop and deploy culturally-informed consumer health IT, particularly among end-users who historically have suffered from racial and ethnic healthcare disparities.

7 Conclusion

Racial and ethnic healthcare disparities are a national problem requiring immediate attention. Attention to cultural differences has been promoted as a means of reducing these healthcare disparities; however, solutions have been limited to creating culturally competent providers or healthcare delivery systems. To aid in solving this “mess,” however, the solution space must be expanded to include the creation of culturally-informed consumer health IT. Thus, designers must create consumer health IT interventions that are culturally appropriate. Although the healthcare informatics community has taken preliminary steps toward creating culturally-informed consumer health IT, much remains to be done.

By articulating the need for and presenting a framework for culturally-informed design of consumer health IT, we have conceptually organized a body of existing work and provided a practical starting point for designers to systematically integrate cultural factors into the consumer health IT design process. In the future, much work remains to be done which explores and explicates relevant means of obtaining data on cultural difference, integrating this knowledge into design, and evaluating the impact of culturally-informed design on outcomes such as usability, usefulness, satisfaction, and ultimately, health outcomes. We strongly encourage researchers and practitioners working within the healthcare informatics community to contribute to the systematic development of culturally-informed consumer health IT by using the framework provided and by dedicating resources toward advancing methodologies to guide both its design and evaluation.