Consumer Health Informatics: Healthcare At Home
The last twenty years have witnessed the increased participation of lay people in health care. The home is fast becoming the central site for health and health care (Aliotta & Andre, 1997). Health care in the home includes not only care activities such as disease prevention and health promotion, but also managing health information. Health care in the home can include professionally delivered care. It also includes self-care, which is unpaid work done in the home by lay people in order to accomplish household goals. As lay people become more active consumers of health care, they must also keep track of a myriad of health data and know how to utilize appropriate health information management tools.
Additionally, information technology (IT) plays an increasingly important role in the household and is used for many purposes, including paid work, recreation and personal information management (Venkatesh, 1996). Information technology may be able to link individuals in the home to health professionals and to relevant and timely health care information and provide them with electronic tools that help them manage the complexities of health care. However, human-computer interaction (HCI) researchers have studied the impact of IT in the home and have shown that the assumptions embedded into IT as designed for the work place do not necessarily fit with household patterns of use and behavior (Berg, 1999). Design of IT may be better informed by how lay users accomplish the tasks that might be supported by information technology applications.
The complexities of the home environment pose several challenges to IT designers. First, there is the large and diverse amount of highly specialized health data that must be obtained from, interpreted, and shared with many health care providers. A great deal of this information is paper-based. Moreover, its management co-occurs with a number of other daily household tasks. Most importantly, no single, central site for health information management exists in most homes: health information management appears to occur in many spaces in the house, including bedrooms, kitchens, and living rooms. These complexities may require that current engineering methods be modified before being used in the home environment to design information technology (Venkatesh, 1996).
Historically, approaches to the assessments of information technology applications for the home have been described as a “technology push” in which innovations are developed and their fit within the intended environment is assessed after the innovation is deployed (Nielsen, 1993). Before engineers can design appropriate information technologies for managing health information in the home, they must understand the home environment in a systematic manner. This understanding will enable the development of information technology tools, which will fit the ways health information is managed within the home. This paper will explore the relevance and importance of health informatics application at home healthcare.
Health Informatics at Home Healthcare
Health care in the home represents a purposeful application of the skills of home residents and available resources to accomplish health care goals. Accomplishing these goals can be complicated by the fact that household members involved in health care activities at home must sometimes balance these activities with professional work, additional home work, and the needs of other household members. Health information management tasks carried out by household members using different resources in the home environment are an important part of the overall maintenance of household health. It is useful to explicitly characterize the work involved, the people involved, and the home environment to understand where and how human factors engineering methods can insure optimum use of the environment, the home dwellers, and the associated devices to achieve health care goals (Berg, 1999)..
In the field of consumer health informatics, a sub field of medical informatics that makes health information available to consumers, a different approach that has been used to study the use of information technology for personal health information management. Consumer health informatics designers have focused on the content to be delivered by the application being developed. For example, in Tetzlaff (1997), an application was developed for the home care of children with cancer. Families participated in a design process to identify important content. Parents were mailed questionnaires on informatics requirements and they were observed interacting with a computer prototype. Study methods, however, did not examine the multidimensional context in which the application would be used. For example, if the application was designed to be accessed from home, it would be important to know how it would fit with the day-to-day health management tasks that already occurred in the home.
In the another study, Kinzie, Cohn, Julian, & Knaus (2002) developed a framework for the design of a family health history collection site to be used by both patients and primary care physicians. The design process consisted of what the researchers described as a “user-centered approach” that included the use of questionnaires to conduct needs assessment. The needs assessment methods included interviews, surveys, focus groups, and observations. The researchers used a contextual approach with the primary care physicians by focusing on workflow issues. Patients were only involved to verify information and content needs for the website. Their own workflow, however, was not assessed. In order to have a more usable IT solution, it is important to consider the context of use of all the end users. Otherwise, developers may risk that the system is not used to its full potential or that it is rejected by the target population (Lee, 2000).
Information technology applications designed for personal health information management have the potential for better support of and reducing stress related to lay people’s health information management tasks. This may include alleviating ongoing difficulties with navigating the health care system and keeping track of relevant health information. In that sense, informatics designers have the opportunity to provide as many consumers as possible with stability or security by giving constant and easy access to helpful health resources and making them active participants in the care process.
However, introducing new technology into the home can have great impact on existing household work processes. Information technology solutions designed without consideration for current in-home work may create additional work for end users because the “solutions” cannot be easily integrated into established routines. In order to maximize the potential impact of new in-home technology, it is important that the solution be designed to fit to the home environment. More importantly, questions about health and health care are related to people’s personal identities and can be anxiety producing. Therefore, a methodology developed to inquire about health and health information management practices must not only present an accurate description of the home, but also must be something people can and will take part in.
Consumer Health Informatics
As patients become more active consumers of health care, they are also becoming more involved in decisions about their care (Sepucha, Belkora, Tripathy, & Esserman, 2000). At the same time, the Internet has become a powerful tool for the delivery and retrieval of medical information (Cumbo et al., 2002). Thus, health care consumers have begun to benefit from web-based decision-support tools to guide their decisions about medical treatments and tests from within their homes (Schwitzer, 2002). Consumer health informatics applications range from decision-support tools to personal health record portals to health information websites (Starren et al., 2002). Some of these applications are provided as kiosks or tools to be used at the care site, and many of these are expected to be used from the patients’ home or dwelling.
Because consumer health informatics applications are aimed at lay people and not professional workers, their success may hinge on the extent to which their development entails the use of a user-centered design that will meet the needs of the particular population of interest. The health care and health information management needs of patients can be identified using several methods such as focus groups, surveys, in depth interviews, and literature reviews. Development of some consumer health informatics applications has involved surveys of both providers and patients (Boberg et al., 2003), with other studies giving providers’ insight into user needs and literature greater weight (Tetzlaff, 1997). A technique commonly used to elicit this kind of information is needs assessment.
One research group in particular has used needs assessment for direct assessment of perceived needs of specific group of people (Boberg et al., 2003). When developing the needs assessment instrument of the Comprehensive Health Enhancement Support System’s (CHESS) module for breast cancer patients (Gustafson et al., 2003), the CHESS team used an integrative group process and a survey as their needs assessment methods. The integrative group process aims to obtain maximal information from a group of “experts”. In this case the CHESS team identified their customers as breast cancer patients, their partners and their daughters. The group of experts was then composed of their “customers” as well as health care providers.
The advantage of using an integrative group process is that it treats each person as a valuable asset, thus increasing each person’s commitment and contribution. In the development of the CHESS breast cancer module, before the group meeting, participants were interviewed using the critical incident technique. Participants were asked to remember events related to their experience with cancer and its treatment and critical incidents related to each event. While remembering these events, each participant helped develop ideas that would be further discussed at the group meeting.
Using a needs assessment methodology that incorporates the views of patients without imposing a priori patient needs is essential to developing an effective and useful decision-support tool. When analyzing use of the breast cancer CHESS module, researchers found that there are different needs for different age groups and kinds of customers (Gustafson et al., 2001). They found that different people used CHESS differently. For example, the patients with more education made more use of support tools, whereas patients from traditionally underserved groups made more use of the information and decision tools of the system. Had the needs of customers not been assessed carefully, some of them might have not been incorporated into the design of the system, rendering it useless for certain populations.
The use of the application would require an Internet connection, which means that the placement of the home’s electrical and phone outlets would limit the number of locations where the computer could be placed. However, since health information management activities can occur in different locations within the home, a mobile device would have been more suitable for ease of use. Since the CHESS module is a decision-support tool, the focus on content is appropriate. Yet this focus may be too narrow when designing technology or solutions to support home health or health information management.
In a similar study, Street, Voigt, Geyer, Manning, & Swanson (1995) studied the effectiveness of pre-consultation education of breast cancer patients. Study participants were randomly assigned to either the brochure or multimedia pre-consultation. The pre-consultation was designed to help patients gain a better understanding of the different treatment options before meeting with physicians (Street et al., 1995). Results showed that patient involvement in physician consultations varied by education and age. Patients who were college-educated and younger than 65 were more active participants in the consultations (Street et al., 1995).
However, had researchers interviewed the participants prior to designing the intervention, they might have designed interventions that would benefit the two subgroups of the patient population. Again the variance in patient involvement underscores the importance of identifying these differences before designing the system. Older patients, for example, may not have wanted to be as active and may have had other needs like that of receiving printed doctor instructions. By recognizing these needs, the researchers may have been able to develop an intervention useful to the entire patient population or to develop different solutions to support the different subgroups’ health information needs.
Tetzlaff (1997) describes a consumer health informatics application developed for the home care of children with cancer. Study methods were designed to include families in the design process. Parents were mailed questionnaires on informatics requirements, and they were observed interacting with a computer prototype. The author even highlighted the complexity of home care. The author explained how patients’ and caregivers’ health care responsibilities take place in a multidimensional context with informational, social, physical, and psychological demands. Yet the clinic staff was the source of information about the primary concerns of parents. Parents were not included in the needs assessment process.
Kinzie, et al. (2002) developed a framework for the design of a web site to be used for the delivery of health information. The design is a user-centered process that includes techniques for needs assessment. In this case, the end users of the system would be both patients and primary care physicians. The investigators decided to develop a family health history collection site. The study’s needs assessment methods included interviews, surveys, focus groups and observations. With patients specifically, the needs assessment was conducted using interviews and focus groups to learn their understanding of, and experiences with, family health history. Patients were also surveyed on their computer use experience and abilities.
Although the data collected yielded important information that was essential to the development of the site, it did not touch on the context in which the technology would be used. Study methods did not yield information about the location, for example, home, work, or clinic, where users would be utilizing the service, nor did they take into account the resources available in the environment where these users live and work and whether or not these resources would support or hinder website use. The data obtained from patients focused mainly on the content of the application and usability issues concerning the user interface. Yet, when assessing the needs of primary care physicians, not only was the content of the information they would need considered, but also how the information would be incorporated into practice.
For example, the research team conducted observations of interactions between patients, genetic counselors, and an oncologist during three counseling sessions at a cancer genetics clinic and learned how patients incorporated the information into their lives. Furthermore, during focus groups physicians were asked how family health histories were collected and interpreted and what kinds of support would help them in doing so in order to have a better designed and more usable system. Thus, it is important to consider the context of use for all the end users.
The home is now an integral part of the health care delivery system. While some effort has been made within the health care literature to understand health care tasks in the home, these have been limited to the study of patients with chronic conditions and how their families cope with change or make decisions about care. For the information technology applications used in households researchers illustrated some overarching factors that can affect the use of the technology. These are: (1) ease of use, (2) privacy, security, and ownership, (3) user needs, (4) interaction with home space, and (5) functional flexibility of the technology.
For technology to be used, it must be acceptable. Some of the devices researched failed because participants had difficulties installing and using them (Lee, 2000). System acceptability goes beyond usability by also encompassing the complete design of the system, its utility, and usefulness as well as how consumers will interact with it (Nielsen, 1993). It also means that adequate support must be available so that users can troubleshoot any problems they encounter.
Overall, the development of most consumer health informatics applications fails to address context within which the technology and/or health information is used and/or obtained. They focus on examining system use and general satisfaction with ease of use. Field studies of the use of other information technology applications in the home, though, have found that rejection of technology could have been avoided by taking into consideration the environment in which the technology was to be used (Lee, 2000). For example, some participants in one study complained about the lack of privacy of using e-mail through a WebTV system whereas other participants liked being able to use it in groups (Lee, 2000).
Additional issues such as access to Internet/computer/printer, access to resources that can help patients understand and interpret health information search results, whether people search for information for personal use or for others (i.e. family, friends), when the behavior take place, locations, length of time, and frequency are generally not addressed in the consumer health informatics literature. Furthermore, although an increasing number of studies are taking into consideration sociotechnical systems issues in the design and deployment of information technology in health care organizations (Berg, 1999), very little has been done using that same approach to understand how the design of consumer health informatics could impact home work and, ultimately, patient outcomes.
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