This study draws upon cultural hermeneutics to provide insight into the ways Personal Health Records (PHRs) project an information world related to health. Differences in PHRs can range from key variations in functionality to differences in how they make the experiences of users more akin to personal interactions than to clinical visits or impersonal e–commerce transactions. This study provides analyses of design and communication issues in three PHR Web sites, offering preliminary conclusions about the potential impact of differences in design and functionality, as well as the inclusiveness of these interfaces for populations traditionally underserved by technology design. Additionally, it undergirds its analyses with a theoretical approach rooted in the theory of Information Worlds, which suggests that each PHR interface projects a specific “information world” that both enables and constrains not only user options and activities, but also how users are able to understand the parameters of “health” itself.
Previous PHR research
The theory of Information Worlds
Method: Cultural hermeneutics
Discussion and conclusion
Historically, study and evaluation of interface design has focused on issues related to usability and outcomes (Agarwal and Venkatesh, 2002), efficiency, and, more recently, persuasion (Mayhew, 2008). However, as applications have evolved and more attention has been paid to a myriad of virtual interactions, research has moved beyond basic questions of usability and utility in order to focus on the ways in which users interact with interfaces as they integrate them into their daily lives. Interaction designers are striving to develop interfaces that embody emotion, personality, trust, and social attitudes and that reflect and support common patterns of user experience (Benyon and Mival, 2008; Crumlish and Malone, 2009).
This study, melding a theoretical approach rooted in the theory of Information Worlds (Burnett and Jaeger, 2008; Jaeger and Burnett, 2010) and a set of analytic tools derived from cultural hermeneutics (Dickey, et al., 2007), examines design and communication issues in three Web sites that offer users the ability to maintain their own Personal Health Records (PHRs). PHRs, in their simplest form, are secure online records that individuals can use to store medical and health information for themselves, a child, or others in their care (Randeree and Whetstone, 2009). Although there are a number of different approaches to PHR development, such as insurer products (Grossman, et al., 2009) or electronic records for healthcare providers (Steinbrook, 2008; Tang and Lee, 2009), they share the premise that the easy availability of online health information to individuals should play an important role in promoting patient well–being, offering individuals the ability to better understand and manage their own health (Ball, et al., 2007).
Many vendors currently offer PHRs, and the basic functions and goals are similar across most brands and contexts (Ball, et al., 2007; Whetstone and Randeree, 2007). However, individual PHRs can vary widely both in their design and interface characteristics, and in the specific features and capabilities they offer. Such differences can range from key variations in core functionality — including differences in the mechanics of how users are required to enter and store their data and even the degree to which they are able to record different types of data — to more qualitative matters such as the extent to which their interface designs exhibit what might be called “virtual bedside manner,” aiming to make the experiences of users more akin to personal interactions than to clinical visits or impersonal e–commerce transactions.
This study examines three specific PHR interfaces in order to draw some preliminary conclusions about the potential impact of differences in design and functionality. Specifically, the study addresses one overarching question: what kinds of messages do the designs, organization, and tools made available by PHRs send to users about how to conceptualize, understand, and manage their own health information? Drawing upon a framework provided by the theory of Information Worlds (Burnett and Jaeger, 2008; Jaeger and Burnett, 2010) to frame its analysis, the study uses textual analysis methods rooted in cultural hermeneutics to address this question.
A premise of the study is that PHRs both enable and constrain user experiences by virtue of the details of their design — including how they deploy and offer functionalities to users as well as how they offer, organize, and embody health–related information. PHRs can, in this sense, be thought of as types of text, including specific elements, capabilities, and organizational structures that must be “read” by users in order to be used. As with all texts, users must engage in active interpretation of PHRs in order for PHRs to become useful and meaningful.
Conversely, just as written texts enable reading by arranging words into meaningful syntactic and semantic patterns, the design and structure of PHRs actively influence how users read, interpret, understand, and figure out how to make use of them. Further, as with other texts, the process through which users come to understand and use a PHR is subject to a specific set of constraints and limitations inherent in the text itself. To put it simply, just as meaningful interpretation of a text is limited by the specific words and sentences included in that text — for example, a text including detailed language about baseball constrains its readers into understanding it as such rather than taking it to be about cellular biology or astrophysics — the details and specifics of individual PHRs restrict how users can understand and engage with them. For instance, if a PHR offers no information about dentistry and does not provide any mechanism for users to input their dental histories, users cannot easily perceive dental concerns to be related to health, at least insofar as “health” is operationalized within the PHR. Thus, the contents and designs of PHRs have important implications not only for the uses to which they can be put, but also, more fundamentally, for how users understand health in the first place.
That such a relationship exists between texts and readers (or, as we argue here, between interfaces and users) is a fundamental principle of hermeneutics, which studies textual interpretation as a process of interaction between texts and their readers. The function of a text — or, again, of an interface — is, from the point of view of hermeneutics, to project a world that is available for others to take up and, through the interpretive act, make their own. A well–designed and robust PHR projects such a “world” related to health, inviting users in and encouraging them to make the PHR their own, integrating it into their lives. Conversely, an unsuccessful PHR, whether by projecting a vision of health that is too limited or by presenting health information in a way that is not meaningful for users, can not only limit how users perceive health issues in general, but can also impede how they understand and deal with their own health. In the terms of the theory of Information Worlds, the worlds projected by PHRs and the personal information worlds of users may not mesh effectively with each other, or may even be incommensurate with each other.
This study does not investigate the role of individual users in this process — it is not, that is, a user study; rather, it examines three PHRs as texts, attempting to tease out the ways in which they each “project a world.” To do so, it employs concepts from the theory of Information Worlds as well as specific analytic methods derived from social hermeneutics. Thus, this study is, in some ways, akin to formal textual analysis, in which the characteristics and contents of a text are closely examined in order to derive a sense of “meaning” as something projected by the text itself rather than as something that emerges in the mind of a reader as she engages with the text. Thus, our analyses here should be understood to be limited to the actual PHRs themselves; we make no claims about actual user behaviors or understandings in response to these PHRs. Further, this study presents only a particular “slice of time” in the online history of the three PHRs, dating from Fall 2008. Such interfaces are, of course, subject to change over time, and we do not track these changes; indeed, even during the initial data collection for this paper at least one of the three interfaces was radically redesigned, and one of the other sites was subsequently taken down. Our goal here is to make some general claims concerning the ways in which the designs, contents, and structures of user interfaces can “project a world” to their users, simultaneously enabling and constraining what users are able to do with PHRs as well as shaping how users might understand the purposes, goals, and meanings of “health,” as projected by the PHR Web sites. Other PHRs may exhibit differences in how they “project a world” related to health, but each site, we argue, does project such a world within the parameters of which possible user behaviors are assumed and defined.
Previous PHR research
A PHR is an online tool that allows users to record, store, and engage with their own personal health information that can be compiled from various sources (National Alliance for Health Information Technology (NAHIT), 2008). PHRs are envisioned to be used by all health care consumers; however, the initial audience for PHRs is made up of specific groups who would benefit from ready access to personal health information, such as individuals living with chronic conditions (Robert Wood Johnson Foundation, 2008), those with small children (Bjerkeli Grøvdal, et al., 2006), or those who travel or live in disaster–prone areas (Endsley, et al., 2006; Kaelber, et al., 2008). The development of PHRs began in the late twentieth century to provide patients with summaries of office visits with their physician (Tang and Newcomb, 1998). The objectives of PHRs have varied in response to demands for changes in the healthcare system, but currently they are seen as a means for consumers to become their own health advocates, allowing them to “improve their health and manage their diseases” . PHRs are currently defined as “electronic record[s] of health–related information on an individual that [conform] to nationally recognized interoperability standards and that can be drawn from multiple sources while being managed, shared, and controlled by the individual” (National Alliance for Health Information Technology, 2008). Functions can include such things as patient diaries, family history, health information lists, patient information verification, test result viewing, summary notes of provider visits, reminders, management plans, health care education, expense and billing tracking, appointment scheduling, medication management, secure messaging, and questionnaires, etc. (Peters, et al., 2009). The estimated number of PHRs in the United States is between 100 and 200 (Kaelber, et al., 2008). Although PHRs are, potentially, widely accessible, only approximately two percent of Americans use them to store their medical records. PHRs are still in early stages, but it has been argued that those currently offered by insurers do not meet the needs of patients (Grossman, et al., 2009).
Previous studies of PHRs have included examinations of design (Baker and Masys, 1999; Lee, et al., 2007; Marchionini, et al., 2007; Robert Wood Johnson Foundation, 2008); security, including the use of USB devices, encryption methods, and validation procedures (Baker and Masys, 1999; Win, et al., 2006); and issues related to governance (Reti, et al., 2009). Studies of PHRs offered by large companies, specifically Google Health and Microsoft HealthVault (Peters, et al., 2009; Sunyaev, et al., 2010), showed that participants appreciate the PHR offered by Google Health for its clean interface, but that perceived flaws, including concerns about usability, decreased participants’ interest in PHR adoption (Peters, et al., 2009). Sunyaev, et al. (2010) compared functions that are likely to be outsourced such as functionality and medication interactions and side effects, with those that are likely to be provided in house such as search features; the study also examined gaps that exist in current PHRs, including the lack of profile searches or availability of secure messaging. These investigations of PHR usability, security, use, and satisfaction have led to greater understanding for further tool development and deployment. However, studies of PHR are needed to show their impact with regard to specific health management (Tenforde, et al., 2011).
Specific studies of PHRs and clinical use have also been conducted, some focusing on targeted priority population groups, aiming to encourage PHR adoption and to provide evidence of demand, and others aiming to determine possible long–term business models (e.g., Silvestre, et al., 2009). While a pre–use study by Whetstone and Goldsmith (2009) found that few college students had interest in PHRs, including those living with chronic conditions, clinical studies include findings that a small number of orthopedic adult patients maintained a provided record for a year (Denton, 2001); diabetics would use the tool when given access (Grant, et al., 2008); seniors in a housing complex would enter information into a personal health system when given assistance (Kim, et al., 2006; Kim, et al., 2009); and parents of small children would use and enter information into a health record established by a clinic (Bjerkeli Grøvdal, et al., 2006). Furthermore, PHR user studies have suggested that patients want information about their illness and treatment plan and that they prefer personally tailored information (Tang and Newcomb, 1998). Other studies have shown that users appreciate certain functionality, such as posted lab results, the ability to find mistakes in records (Masys, et al., 2002), support for communication with physicians, clinical messaging, prescription renewals, appointment making, and referrals (Halamka, et al., 2008).
The theory of Information Worlds
The theory of Information Worlds (Burnett and Jaeger, 2008; Jaeger and Burnett, 2010) builds upon previous work by Elfreda Chatman and Jürgen Habermas in order to suggest that information behavior should not be conceived of only in terms of isolated acts of individuals’ information seeking behaviors. Rather, the theory provides a way to examine how “information intersects with and is perceived and used in many different social contexts” . The theory melds Chatman’s (see, e.g., Chatman, 1991; Burnett, et al., 2001) concept of small worlds — or the localized social contexts within which people live their lives and interact in a variety of ways with information — with Habermas’ concept of the lifeworld — the “collective information and social environment that weaves together the diverse information resources, voices, and perspectives of all of the members of a society” . Between the myriad localized small worlds of a culture and the full lifeworld of an entire culture multiple information worlds exist; rather than functioning in isolation from one another, these worlds intersect, overlap, and interact, forming the broad social context within which information behaviors occur and take on meaning. From this point of view, PHRs can be seen as artifacts or instantiations of specific information worlds, they provide a context within which individuals can engage in certain types of information behavior and can come into contact with information of certain types. Further, because PHRs are created and made available by specific organizations — whether not–for–profit health organizations or for–profit health–related corporations — they can best be understood as concrete embodiments of the health–related information worlds of those organizations or corporations. When an individual uses a specific PHR, that user’s own localized information world comes into direct contact with the world represented by that PHR. The usefulness and functionality of a PHR is, to a great extent, a function of the degree to which its own information world meshes with and matches that of the user.
The theory of Information Worlds proposes a number of further concepts derived from the work of Chatman and Habermas. For our purposes here, however, we will focus on just one of those concepts. Since our purpose is to examine interfaces rather than the actual activities of users, the most pertinent concept of the theory of Information Worlds is that of Information Value, which is fundamental to our argument. As Jaeger and Burnett  put it, the concept
reflects the different kinds of value that different worlds may attach to information: information may, for instance, have emotional, spiritual, cultural, political, or economic value ... within a specific world. In the broader lifeworld, information is always embedded within some kind of economic and political system ... . Clashes between different information worlds can often result from differences in perceived information value between worlds ... .
Thus, if PHRs embody and project a sense of information value that is different from that held by users, it may have important implications for the usefulness of the PHR. To put it simply, users may either be unwilling to use PHRs that are not compatible with their own sense of information value or, if they use them at all, may misconstrue their actual capabilities and functionalities; such a mismatch may have serious implications not only for how users perceive PHRs, but also for how they conceptualize their own health and their ability to manage and interpret their own health records. This study offers, then, an analysis of the information values built into three PHR interfaces.
As a key component of the theory of Information Worlds is examination of the relationships of different social groups to information sources, this analysis will also consider the implications of the PHR interface for certain specific populations. Since they are devoted to health information, inclusive design of PHRs is of significant consequence to a number of populations that are often underserved in technology design:
Over the brief history of the Web, access to and usage of the Internet by persons with disabilities has consistently been approximately half that of the rest of the population due to technological and economic barriers to access (Dobransky and Hargittai, 2006; Jaeger, 2011). In 2011, 54 percent of adults with disabilities used the Internet, while 81 percent of other adults did (Fox, 2011a, 2011b). People with disabilities who do regularly use the Internet also lag behind in quality of access, with 41 percent of adults with disabilities living in homes with broadband access, in contrast to 69 percent of the rest of the population.
Older adults are the group most likely to not use the Internet entirely by choice and to be resistant to new Internet technologies (Horrigan, 2009, 2008). Older adults are much less likely to regularly use the Internet — and are more likely to limit Internet usage — than many other populations as a result of barriers to initial access (Fox, 2006; Fox and Madden, 2005; Loges and Jung, 2001; Xie, 2003).
Lack of technological literacy — the ability to understand and use technologies — also presents barriers to using Internet technologies. Technological literacy can be tied to education level, access to technology, and language, among other factors (Jaeger, et al., 2011; Jaeger and Thompson, 2004, 2003; Powell, et al., 2010).
As noted above, one of the PHRs examined in this study — Google Health — was, though subsequently discontinued (Lohr, 2011) used by the U.S. government to provide information for Medicaid recipients and thus has particular consequence for inclusion of these populations in enabling or constraining their access to necessary health information and records. If Medicaid recipients — and eventually all other carriers of insurance — will ultimately need to use these interfaces, then a lack of focus on inclusive design will serve to exclude many populations from these tools. Additionally, while the federal government has considered its role in providing PHRs to Medicaid recipients (U.S. Dept of Health and Human Services, 2005; Bullock, 2009), Florida was the first state to offer a PHR to Medicaid recipients (Merrill, 2009). Additionally, a regional housing authority in Washington state investigated offering PHRs to individuals who may well be Medicaid recipients; many of the individuals given access to a PHR are disabled, are elderly, or have low–income (Kim, et al., 2009).
In considering PHRs in the context of these populations, the interfaces will also be judged against the concept of universal usability — the goal that technologies should support access and use by most, if not all, people from the outset. Established information technologies — postal services, telephones, television — successfully provide universal usability (Shneiderman, 2000). For a technology to be universally usable, it needs to be usable in an equitable manner by all users without relying on specific senses or abilities — regardless of age, disability, skill level, technological literacy, and other factors — and also needs to be compatible with the assistive technologies that users may rely on, such as narrators, scanners, enlargement, voice–activated technologies, refreshable Braille, and many other devices that persons with disabilities may employ (Jaeger, 2009; Lazar, 2006; Lazar and Jaeger, 2011; Shneiderman, 2000).
Method: Cultural hermeneutics
Cultural hermeneutics, like other forms of hermeneutics, concerns itself with the interpretation of cultural artifacts such as texts, and addresses the fundamental question of how meaning can be encoded in such artifacts and how it can be transferred via these mediating artifacts from writer to reader — or from creator to consumer — across distances of time and space. Historically, hermeneutics was rooted in efforts to develop strict sets of procedures and rules for deriving “correct” interpretations of Biblical texts (Thompson, 1981). While some recent work in hermeneutics (e.g., the work of E.D. Hirsch, 1967) has continued this insistence on the “correct” understanding of the meaning of texts, the predominant strand of hermeneutic thinking has focused on process of give–and–take and interaction both between writer and text and between reader and text; such a focus acknowledges that, while meaning unquestionably is transferred by texts and other artifacts, such meaning is always subject to transformation and “slippage” both because of the impact of mediation and as a fundamental element of the act of interpretation itself. As LIS scholar Daniel Benediktsson (1989) has put it, hermeneutics deals with “interactions between individual–social factors” and the “objectivated ideas” found in texts and other artifacts (emphasis added); our focus here is on the “objectivated ideas” intrinsic to the PHRs, rather than on the experiences of “real” users.
To date, hermeneutics has not been applied to studies of PHR interfaces, and the use of hermeneutics to investigate other types of information systems has been criticized on the grounds that it does not assure bounded interpretations that can provide “systematic and falsifiable results” . However, such an approach can, as Capurro (2010) has pointed out, provide a framework for a holistic consideration of how individuals interact with technology, thereby providing a means to challenge the “designer fallacy,” which mistakenly assumes that the designer has complete control over the meaning of an interface as well as over how it will be interpreted and engaged by users. Conversely, control over the meaning of a text or an interface is not completely in the hands of the user, either, since the user can only make choices and use functions that are allowed by the system; holistically, the meaning of any text — such as a PHR — is a function of all three parties: the designer, the text itself, and the user.
Much of the information systems research using hermeneutics has drawn upon the work of Hans–Georg Gadamer to research phenomena such as home Internet shopping (Cole and Avison, 2007). However, hermeneutics has also been used to evaluate workers’ acceptance of business process change tools based on “utterances” vocalized during interviews or informal conversations, the social actions of stakeholders (Sarker and Lee, 2006), and to support a study of media richness in email communication (Lee, 1994). It has, further, been applied in contexts such as virtual communities and organizational settings, where it provides for “attention to the context and history of the organizational phenomenon being studied” . Examples of hermeneutics in research on organizational information systems include studies of a macro–level event in the international petroleum industry (Prasad, 2002), relationships in distributed work environments (Dickey, et al., 2006), and IT governance (Webb and Pollard, 2006).
Hermeneutics can also allow researchers to “view information systems as a hermeneutic process” and can help generate alternative interpretations of the interactions between users and systems, specifically when describing how users “read” the systems and “make meaning of them” . Research conducted in this vein has allowed for an analysis of performance reports produced by a personnel evaluation information system to yield images of users (Boland, 2002) and an investigation of a virtual community that used a Usenet newsgroup to discuss firewall technology (Burnett, et al., 2003).
While much modern hermeneutics explicitly rejects specific methodologies, cultural hermeneutics, developed by Becker (1979) and Geertz (1983), proposes a set of four “contextual relations” as analytic instruments for interpreting cultural artifacts. As such, these contextual relations provide a valuable methodological toolkit for examining the dimensions of meaning embedded within textual artifacts such as PHR interfaces. While these contextual relations should not be assumed to function as foolproof keys to deriving unequivocally “correct” interpretations, they can, as analytic tools, provide a consistent set of interpretive foci and approaches to a range of cultural materials. Further, as tools for hermeneutic analysis, they support close examinations of artifacts themselves, emphasizing the ways in which those artifacts encode, embody, or represent aspects of their contextual meanings even in situations where the interpreter has no direct access to the site of their creation. In other words, they are valuable tools for investigating the ways in which cultural artifacts embody and project a world of meaning and signification. They are, thus, ideal for analyzing the ways in which PHRs simultaneously enable and constrain an understanding of “health” for their users.
These four contextual relations, as outlined by Becker (1979) are intention, reference, coherence, and invention. They are operationalized for the current study as follows.
Intention refers to the relation “of the creator to the content of the text, the medium, and to the hearers or readers” , and describes the purposes for which a text is created. Since intention is, strictly, a cognitive phenomenon internal to the writer at the time of a text’s creation, it is not directly accessible to analysis. Thus, it is best operationalized in terms of explicit statements concerning intention. For the current study, this includes statements included within the sites about the intentions of their creators, how they are intended to be used, etc. In addition, it includes definitions of “health” as implicitly characterized by the kinds of information and patient capabilities they make available. For example, sites might implicitly “intend” for patients to take an active role in their own health by providing multiple ways for users to manage their health resources, set goals about their health, etc. Conversely, if a site excludes capabilities or information related to a specific aspect of patients’ health such as, for instance, dental health, it can be said that the developers of the site do not “intend” for patients to see dental health as a fundamental aspect of their own health.
Reference, or the relation “of textual units to nonliterary events” , concerns the ways in which external objects and events enter into the text or the ways in which a text refers to the world outside of itself. In the PHRs examined in this study, this relation is used to analyze how the sites refer to issues such as individual, familial, educational, organizational, or social objects and events related to health, including medications, conditions, family members, nutrition, patient activities, site practices, support groups, etc.
Coherence is the “relations of textual units to each other within the text” . It defines the set of formal constraints or rules inherent in texts, including matters such as the norms of grammar and other types of textual practice. For this study, coherence is defined as the formal structure — the design syntax, as it were — of the PHR Web sites, including aspects of the layout and design as well as the formal characteristics of the organization and presentation of information within the sites. This includes matters such as the deployment of links and multiple pages within the sites, where certain types of information appear, how visible they are in relation to each other, and how navigation options are presented through the sites.
Invention refers to the relation “of textual units to other texts” , and is a measure of the contents of texts in relation to bodies of knowledge and practice established by prior texts. Texts can either “speak the past” via direct reference to such prior texts or can “speak the present” by creating new knowledge. For this study, invention is analyzed along two dimensions:
The degree to which the PHRs provide links to either internal or external information resources that “speak the past” by providing authoritative information to users regarding health issues.
The degree to which the sites enable users to “speak the present” regarding their own health and health concerns by inputting their own information rather than merely choosing from pre–existing lists of medication, conditions, etc.
The researchers selected PHRs for review from a potential pool of more than one hundred. PHRs are offered through various sources, including insurance companies, health care providers, employers, and private companies, but this study focuses on three: Google Health, WebMD, and iHealthRecord. These were purposively chosen in that they offer different functionalities and are offered by different organization types: Google Health is a corporate entity who is partnered with the federal government for health information technology; WebMD is a corporate site which also provides services for corporations; and, iHealthRecord was created by Medem in tandem with the American Medical Association. Medem’s PHR is interoperable with Google Health in that iHealthRecord can import the data. The differences in functionalities across these products were captured during the review of each PHR. While Google terminated its Google Health venture in 2011 due to low levels of interest (Lohr, 2011), the Google PHR is still relevant for this study as an example of one approach to the challenges of providing interactive health information to consumers.
The researchers iteratively reviewed the three PHR sites for the four constructs of cultural hermeneutics; each site was analyzed repeatedly, until new content relating to the four constructs failed to become visible. This iterative reading is based on Gadamer’s hermeneutic circle, which intimates that a text comes to be understood as a whole based on iterative interpretation of its parts. Given that this is the first study that applies cultural hermeneutics to software interfaces, this analysis serves to identify the relationship between the constructs and specific components of a software interface.
This section provides the results of the analysis for the three interfaces relative to the four cultural hermeneutics categories (intention, reference, coherence, and invention).
Intention designates the relation “of the creator to the context of the text, the medium, and to the hearer of readers” ; in terms of the theory of information worlds, Intention provides a signal to the users or readers of the text what information values they are meant to glean from the text. In particular, Intention takes the form of either as an explicit articulation of the purposes for which a PHR is created or an implicit characterization of such a purpose that can be inferred from the kinds of information and capabilities offered. In the context of this study, interface characteristics related to Intention signal to users how they are “intended” by the interface designers to understand the parameters and dimensions of their own health, as well as what values they are expected to attach to those features. From this perspective, the three PHR interfaces under examination “intend” quite different purposes. Because such purposes can be considered to be preliminary to any actual functionalities or uses, this analysis focuses on the PHR’s Intentions as reflected in their three entry pages, which serve to provide users with significant base–level concepts and functions.
As is typical of services offered by Google, the Google Health PHR (Figure 1) uses a simple, stripped–down design, presenting a quite limited set of links and tools that signal its intention as a basic, no frills tool for storing and organizing health information. As a result of this simplicity, this PHR projects a narrow definition of what constitutes a “health record,” linking such a record to a restricted set of variables and categories of information, including demographics, condition, medications, allergies, procedures, tests, and immunization.
Figure 1: Opening screen of the Google Health PHR.
Strikingly, the Google entry page provides no sense that a user’s health may also be closely related to broader contextual concerns, such as social, legal, or familial connections. The interface signals a further intention as well, though again in a somewhat limited manner: just as it is possible for users to enter personal information, it is also possible for them to gather information. However, the interface’s design tends to subsume its information gathering tools — limited to only a couple of very general links for exploring services or finding a doctor — within the longer list of information–entering tools. Overall, the conceptualization of “health” intended by this interface is limited purely to a matter of information, which can either be created or sought for by the user. Broader contextual concerns are passed over, as is any indication that “health” may be understood or engaged more actively. Thus, this interface restricts users’ ability to conceptualize their health: information value is, in this case, a strictly individual matter, and purely a matter of using — entering or seeking — information.
Even a quick glance at the WebMD interface (Figure 2) suggests a quite different Intention. While it is, like Google’s, clearly a tool for organizing, storing, and seeking information, this PHR signals a wider, more family–centered definition of “health” and of what constitutes a “health record.” In addition to basic health categories, WebMD foregrounds a more robust set of health characteristics and functions, including capabilities allowing users to establish goals, think about nutrition, and involve their families in their health activities, both by allowing family access and by supporting additional records for other family members. Further, in comparison to Google, WebMD “intends” health to be conceptualized not just as a matter of information activities, but as a more personal and active concern, emphasizing personal pronouns integrating personal message capability, greeting the user by name, and suggesting that the information it makes available has been customized particularly “for you.” In terms of the theory of information worlds, WebMD adds value to the provision of information by conceptualizing information not simply as a static set of facts and bits of data, but as something with human meaning, both informational and affective.
Figure 2: Opening screen of the WebMD interface.
The kinds of information explicitly offered suggest a broader Intention than that presented by the Google interface; not only are information resources personalized, but they can be customized to reflect the preferences and concerns of individual users, rather than just offering general capabilities of exploring “health services” or finding a doctor. This interface “intends” to situate health in an implicitly warm and friendly environment, and to see it as a matter not just of information activities, but as something with which to actively engage on a personal level and on an ongoing basis. However, it does tend to limit a conceptualization of health to this purely personal level; while it does provide support for family concerns, it offers only limited information about family settings, and none at all about broader social contexts or other sorts of life activities such as work.
At the most basic level, Medem’s iHealthRecord (Figure 3) is, like the other two, intended to serve as a tool to support users’ ability to organize, store, and seek for information related to their health. However, its home page signals a much broader, more holistic Intention as well, making it clear that the parameters of health include not only purely medical concerns such as conditions, treatments, medications, etc., but also a range of familial and social concerns, including matters related to employment, insurance, legal issues, and more. While Google’s interface projects an intention to treat health primarily as a matter of information, and WebMD’s treats it as a family– and activity–oriented process, Medem’s situates an individual’s health within a broad social context, recognizing that non–medical concerns — financial, legal, and cultural — also have direct relevance; health, that is, is simultaneously personal, professional, and social. In terms of the theory of information worlds, Medem sees information value as a function of the embeddedness of information within a broader social and behavioral context. On the other hand, unlike WebMD, Medem offers no immediately evident Intention to conceptualize health as an ongoing process; there is no clear capacity to allow users to track diets, establish lifestyle goals, or otherwise engage in health–related activities other than seeking for and storing information.
Figure 3: Opening screen of Medem’s iHealthRecord.
The Intention of interface design also can be revealed through consideration of the inclusiveness of the design — the audiences “projected” by the characteristics of the interface. The simplicity of the Google interface suggests an inclusive intent. The simplicity of the product makes it easier for those with less experience with technology to follow, reduces the intimidation factor for users who are resistant to the technology, and increases the ability of the interface to meet the needs of and work with the assistive technologies employed many persons with disabilities. While this design may, as our analysis suggests, lead to conceptual restrictions, it also tends to promote inclusion of a wide range of users.
In contrast, the intentions of the other two interfaces do not appear to be inclusive, at least to the underserved populations defined earlier. The greater detail and context does enhance the experiences of many users, but it also may serve to limit the inclusiveness to underserved populations. Both interfaces have a great deal of content on each page, which will challenge those with diminished cognitive functions due to disability or age, while simultaneously intimidating those with lower technological literacy. Considered purely in terms of content, such complexity suggests an intention to provide a rich information environment, reflecting a richly conceived world of “health”; in terms of access and inclusiveness, however, this very conceptual richness of the information environment may serve to impede access.
Reference concerns the ways in which a text alludes to the world outside, allowing external objects and events to become parts of itself; in the context of this study, it can usefully be thought of as the universe of information deemed to be relevant for health. This outside world is, perhaps not surprisingly, relatively consistent across all three interfaces in terms of the provision of information. All three share a common base level of reference, explicitly referencing typical health–related concerns such as medications, allergies, conditions, immunizations, procedures and surgeries etc. All three refer to a common set of medical conditions, and provide users with access to information about those conditions (see, for example, Figure 4, which includes a list of “Conditions” from which users can choose).
Figure 4: A “conditions” screen for PHR users.
Beyond this base level of reference, the three sites differ in ways that are consistent with the quite different intentions outlined in the previous section. Overall, Google limits itself to information about purely medical matters, not including familial or social matters in its universe of reference. WebMD also references such medical information, but, further, refers to activities and pursuits related to health goals, diet, etc., while limiting or omitting references to matters related to family settings and broader social concerns. While Medem omits the kinds of references to activities and lifestyle goals so prevalent in WebMD, it otherwise presents the largest universe of reference of the three, contextualizing health within a wide range of concerns and kinds of information, including not only medical references, but also legal, financial, and cultural references. All three sites place a strong value on the kinds of information related to reference, that is, but conceptualize that value differently, along the lines discussed above.
Reference in these interfaces can have important implications for users from underserved populations, potentially promoting a sense of inclusion and support. The ability to easily find content tailored to the condition that the user is seeking has the potential to provide a sense of inclusion to those otherwise unfamiliar with or resistant to the technology. For older adults, people with cognitive impairments, and those with limited information literacy, the common base level of reference may also help to transition between the different interfaces, if necessary. The broader levels of reference in Medem and WebMD — if not overwhelmed by the functionality necessary to engage these levels of reference — may enhance the ability of some underserved populations contextualize the information from the interface into more familiar information norms and value.
Coherence concerns the set of formal constraints or rules — such as grammar and syntax — inherent in texts; in the context of this study, it refers to the formal structure of the PHR Web sites, including visual layout, how and where certain types of information appear, navigation pathways, and the formal characteristics of the organization and presentation of information within the sites. As with Reference, the ways in which the three sites exhibit Coherence both reflect and extend their Intentions, and provide visual and organizational cues designed to project their conceptions of information value to their users.
WebMD employs a design and organization that is considerably busier than Google’s, not only placing many different kinds of links and options across the home page, arrayed — and, in general, logically clustered — in three columns and requiring users to scroll down their browser windows to access everything, but also changing design elements and the content of the columns from page to page, apparently in response to the content foci of individual pages; some pages, for instance, follow the home page’s use of three columns while others offer only two. While such inconsistency and complexity of design, with an abundance of links and options simultaneously available, may pose more challenges to users, requiring them to read much more text and make more active choices than the Google interface, it also, arguably, can be seen as a function of the site’s Intentions, which emphasize users’ active engagement with their own health, encouraging them to set goals and track progress. In terms of Coherence, that is, WebMD’s site requires more active engagement and effort from its users than does Google in order to operationalize its Intentions.
The PHR offered by Medem’s iHealthRecord (see Figure 5) offers a scrolling interface and navigation consistently anchored at the left of the screen, with a large content column in the center of the screen, and no third column. This fundamental design clearly delineates available functions by structuring screen “real estate” through the placement of elements. The primary categories and navigation choices are clustered into a visually distinctive column on the left, while a functionally different — and shorter — set of categories are presented as tabs near the top of the screen, freeing up the bulk of the screen to display content and/or to allow users to make choices, enter data, etc. The site visually distinguishes between information seeking tasks and tasks related to records management both by placing those tasks into different categories and by providing distinct visual cues to highlight their differences. For example, Medem’s interface uses aspects of design Coherence to prompt the user to do certain things, displaying empty fields and offering clear and explicit instructions to invite users to update records and add new information. As the next section will make clear, Medem — unlike either Google or WebMD — deploys Coherence as a mechanism for supporting the fourth contextual relation, Invention. Indeed, it could be argued that the site’s design does as much as anything else to promote the holistic and robust Intentions embedded in the site.
Figure 5: “Medications” screen in Medem’s iHealthRecord.
Coherence is of extraordinary importance to users from the underserved populations at hand. Older adults and persons with sensory, motor, and cognitive disabilities all strongly benefit from design that is consistent and coherent, as the ability to anticipate consistent functionality reduces barriers to understanding a technology (Jaeger and Xie, 2009). The simplicity of Google promotes ease of use through its coherence, as was suggested in the earlier discussion of Intention.
WebMD, in contrast, relies on scrolling, multiple columns, and changing design, all of which reduce coherence and serve to inhibit the ability of users with physical disabilities to navigate the technology, while also creating barriers to older adults, users with cognitive disabilities, and users with lower levels of technological literacy through the inconsistencies. The reliance of Medem on visual distinctions and design as prompts for actions from users, however, presents very sizeable issues for users with visual impairments. For a user with low vision, severe color blindness, or no vision, this design approach will not only be lacking in coherence, it may be virtually unusable.
In addition, the tight clustering of links in the two more complex interfaces may create challenges for users with reduced motor control due to disability or age, and the many layers of columns, tabs, tables, and buttons will challenge users with visual impairments, particularly those who need to use a screen reader.
Invention refers to the degree to which a text either repeats existing knowledge (“speaking the past”) or supports the creation of new knowledge (“speaking the present”). In the current study, all three PHRs “speak the past” in very similar ways — all three provide users with easy access to existing information — while differing quite a bit in their support for “speaking the present.”
Google Health clearly constrains its conceptualization of health as a matter of “speaking the past.” In this regard, the site’s overarching goal appears to be to allow users to create a single (and largely static) record, primarily by offering them lengthy lists of medications, conditions, etc., from which they must choose. When the term for a user’s condition (or medication) does not appear in the pre–existing list, it is possible for a user to enter his or her own term, thus adding it to the database, but such capability is relatively limited. Again, such a focus on “speaking the past” clearly mirrors Google’s Intention to conceptualize a health record primarily as a repository for information.
Conversely, WebMD provides explicit support both for “speaking the past” by providing access to existing information and for “speaking the present” by highlighting users’ ability to set their own health–related goals and track their progress in reaching those goals. Interestingly, however, WebMD also constrains users’ ability to “speak the present” in some important regards, by providing no clear way to add new terms to the pre–existing lists of things like conditions and medications. Still, overall, the WebMD PHR tends, in keeping with its more action–oriented Intentions, to emphasize the invention of new user–specific information above the more static approach taken by Google.
As noted above, Medem actively deploys features related to Coherence in order to support Invention, by foregrounding fields by means of which users can create their own information, rather than merely choosing terms from a pre–existing list. On the other hand, it does not emphasize “speaking the present” nearly as emphatically as does WebMD, offering nothing equivalent to the latter’s goal–setting and tracking features. Of the three, Medem provides the most robust support for “speaking the past” by explicitly emphasizing historical context, allowing users to create and add their own personalized information about family history, and to customize their health record to meet their own needs. In terms of the theory of information worlds, all three sites place high information value on “speaking the past” to some extent, while only WebMD appears to place much information value on “speaking the present” by allowing users to develop, input, and maintain their own idiosyncratic information.
If access is not limited by functional barriers, such as those discussed earlier, the elements of invention projected by the interfaces can be of benefit to multiple underserved populations. For users with cognitive impairments and reduced cognitive capacities due to age, one of the most important design principles is the provision of reminders within a site as to content, task, and location with the site. Invention also seems likely to add a dimension of familiarity to overcome unfamiliarity with or resistance to the use of a technology.
Discussion and conclusion
This study set out to provide an analysis of three PHRs based on four concepts — intention, reference, coherence, and intention — derived from cultural hermeneutics, with an eye toward both the richness of the information worlds projected by the sites and the degree to which they support access to health–related information by disabled and otherwise underserved populations. If PHRs are to successfully fulfill their mission of offering easy availability of online health information to a wide range of users, both of these goals must be addressed: a successful PHR must not only provide a set of information resources and user capabilities without over–simplifying the potential complexity and richness of users’ understanding of “health” but must also make that information available via an interface that is simple enough to be easily navigated and used by all.
The findings of this study suggest, however, that there may be an important tension between these two goals, at least when it comes to the three PHRs examined. As noted earlier, many established information technologies — postal services, telephones, television — tend to provide near universal usability. In part, this may be due to the relatively simple interface designs typical of these technologies; telephones, for instance (with the exception of the much more complex recent phenomenon of smart phones) typically offer only a minimal set of interface options for both input and output.
In addition, when considering an information technology such as a telephone, there is a clear division between the device and the information that it transmits; the telephone, that is, functions purely as a conduit, and the complexity of information it transmits is a function of the words spoken by those using it. Similarly, the traditional postal service can best be seen as a system that is able to move containers of information of various sizes and configurations from one place to another; again, the information transported through the system is independent of the system itself and — unless it is somehow destroyed or damaged — minimally influenced by the characteristics of the system.
Even books, as physical objects, can be seen in this light: they are containers for information, and the complexity of the information contained in them is less a function of the container itself than it is of the language (and graphics) by means of which the information is expressed. The degree to which a book, as an information technology, supports a user’s ability to actively interact with information it contains is limited to a relatively small set of options: it is possible to dog–ear pages, add notes in the margins, etc., but not to add pursue one’s own information activities with the capabilities and functionalities of the book itself — the information added via marginalia, for instance, will never become part of the book in the strictest sense by being integrated into the book’s index or actually leading to changes in the book’s text in subsequent editions. In terms of cultural hermeneutics, books can function as powerful — but easy to use — information objects with high levels of both reference and coherence, as well as the ability to, themselves, both “speak the past” and “speak the present” by communicating a mix of new and old information to readers. However, the design characteristics of a book project neither an intention to support full interaction nor support for users themselves to “speak the present” by adding their own information to that already present.
In the case of the PHRs we examined, however — and in the case of the Web in general — the interface cannot be so easily considered apart from the information it makes accessible. This is the case, in large part, due to the nature of the Web as an inherently interactive medium. Thus, PHRs, at the most basic level — and this is true to varying degrees of all three under examination in this study — embody an intention not only to transmit or communicate information, but to allow users to tailor and customize that information to reflect their own situations and to meet their own personal health needs. The capacities of PHRs to meet the individualized information needs of each user ultimately make the concept of a universally usable PHR across information worlds more difficult to achieve.
PHRs are unlike more traditional information media such as telephones or books in at least one very important regard: although they all have the ability to convey or communicate complex information, the additional intention of supporting users’ ability to “speak the present” of their own personal health through interaction requires an interface that is far different from the relatively simple interfaces of telephones or books. Users not only face the challenge of dealing with complex information — and, as something that is deeply intertwined with all of the myriad aspects of one’s life, health information is intrinsically complex — but must also, in order to take advantage of the full range of PHR capabilities, cope with an interface that is, inescapably, far more complex than what is found in more traditional information media. The complexity found in PHRs — and the challenges we have found for persons with disabilities and other users — thus unfolds along two dimensions simultaneously: not only is the information itself multifaceted, but the tool required to work with that information — the interface, with its many functions and capabilities — is also, of necessity, complex.
This complexity also points to the challenges of making these PHRs universally usable to the wide range of information worlds that will need to interact with them. The user experience of interactive online technologies such as PHRs is heavily dependent on the social and access values — the information values — of the designers and owners of the technologies (Friedman, 1997; Knobel and Bowker, 2010). These values result in technologies that provide different levels of usability to those with different levels of information access and information literacy, typically benefitting the already technologically privileged (Corbridge, 2007; Hanson, 2008; Jaeger, et al., 2013; Mackenzie, 2011). The challenges in PHR access and use seem to follow this pattern, with the challenges particularly pronounced for information worlds already disadvantaged in technology access and literacy, but whose members will also be more likely to need to regularly use PHRs.
As a result, the dual goals of PHRs, as we have described them — to provide an information–rich environment that can project a rich and multi–faceted conceptualization of health for users and to do so in a way that does not violate the mandates of universal accessibility — present a clear problem for their designers. Of the three PHRs examined here, one clearly presents fewer challenges to users with disabilities, but (if our analyses are correct) at the expense of the richness of the information it contains and the range of users’ abilities to engage in managing and creating their own conceptualizations of “health,” while the two others are more robust in terms of information and functionality but potentially problematic in terms of accessibility. This study makes a clear contribution by identifying and adding to our understanding of this problem but must remain silent regarding potential solutions. Such solutions must wait for future research and future PHR designs.
About the authors
Gary Burnett is a Professor at the School of Library and Information Studies at Florida State University. Dr. Burnett’s research focuses on the social contexts of information behavior and on the relationship between information and social interaction in online settings.
Melinda Whetstone is a Ph.D. candidate in the School of Library and Information Studies at the Florida State University. Her research focuses on health information behaviors in context of health information systems.
Paul T. Jaeger, Ph.D., J.D., is Associate Professor and Diversity Officer of the College of Information Studies and Co–Director of the Information Policy and Access Center at the University of Maryland. Dr. Jaeger’s research focuses on the ways in which law and public policy shape information behavior, particularly for underserved populations.
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Received 29 May 2013; accepted 22 July 2013.
Copyright © 2013, First Monday.
Copyright © 2013, Gary Burnett, Melinda Whetstone, and Paul T. Jaeger. All rights reserved.
Personal Health Record interfaces: A hermeneutic analysis
by Gary Burnett, Melinda Whetstone, and Paul T. Jaeger.
First Monday, Volume 18, Number 8 - 5 August 2013