Research ArticlesImpact of a patient-centered, computer-based health information/support system
Introduction
The health care system has had an ongoing focus on improving access to and quality of care, and more recently on cost reduction. The primary means for achieving these goals have been to change health policy, financing, and provider practices. Changes rarely include efforts to enhance consumer knowledge, skills, or power to become partners in their care. This is a critical blind spot.
Of the limited research on consumer empowerment, much has focused on the disease-prevention benefits of lifestyle choices.1, 2, 3, 4 But consumers can be key players in their health care even after diagnosis.5, 6 A growing body of research finds that a consumer with a deeper understanding of the diagnosis, treatment, and recovery and who has support from others, is much better equipped to cope with the illness, by using the health system more effectively and changing their health-related behaviors to influence their course of illness and reduce psychological distress.7, 8, 9, 10, 11, 12, 13, 14, 15, 16
These education and support benefits have been achieved in a variety of ways, ranging from pamphlets to one-on-one teaching sessions, and involving varying intensities of social support. A typical and perplexing tradeoff is between inexpensive, mass-produced, generic materials (e.g., pamphlets), and labor-intensive individual attention over a protracted time. The former are generally designed to cover a broad range of individuals and situations and, therefore, may be less likely to motivate or affect specific individuals. Personalized, intensive approaches may do better at motivating and training individuals, but the costs are substantial and, in today’s climate of cost reduction, may be prohibitive.
The distinction is not simply between mass and interpersonal communication; there have been successful media-based campaigns to inform and activate health care consumers. Successful patient education programs have not come about by providing a single, uniform message to everyone. Rather, they require a complex mix of messages directed simultaneously at motivation, normative beliefs, and behavioral skills.17 The level of effort (and expense) in such cases is substantial, and there is much waste as messages reach those lacking the specific need or situation for which they were designed. Alternatively, patient education efforts have been much more successful when patients and families are provided with messages tailored to their own perceptions of threats and barriers.18 This tailoring makes the message-delivery stage more efficient, but requires a time-consuming information-gathering and delivery process.
Therefore, a key issue is finding more cost-effective and timely ways to deliver the complex mix of educational services (e.g., information, social support, skills training, decision or planning tools) to specific individuals. Ideally, this should maintain the cost-effectiveness of mass communication in technologically multiplying high-quality professional expertise to serve many receivers, while providing the equivalent of individual professional attention by tailoring content to serve individuals with different needs and situations. Computer technology offers an opportunity to do just that by using the economies of “mass media” while simultaneously providing specific, tailored responses to patient needs.19, 20, 21, 22 Interactive computers can help people: (1) access exactly the information they need, whenever they have questions (not just during clinic hours); (2) ask questions too embarrassing to ask a health professional face-to-face; (3) deal with complicated decisions at their own pace; (4) electronically seek sources of support to help them deal with their emotional responses to health problems; and (5) examine how others have survived similar problems—all at their own pace, in their own homes, and with complete confidentiality.
CHESS (the Comprehensive Health Enhancement Support System) is a PC-based computer system designed to offer these services. It was developed by a team of scientists specializing in decision and information systems, education, medicine, and communications at the University of Wisconsin–Madison. Using a personal computer placed at home, people facing life-threatening illnesses (including breast cancer, HIV infection, heart disease, Alzheimer’s disease, and alcoholism) can read brief answers to hundreds of questions, as well as detailed articles and descriptions of services they may need. They anonymously ask questions of experts, and communicate with and read personal accounts of others with similar problems. CHESS decision support tools help patients monitor their health status and risk behaviors, share in important decisions, and plan how to implement their decisions. CHESS content in the AIDS module is approximately equivalent to 3,000 pages, organized into 11 services in various formats. This is intended to allow a person to learn and receive support in ways that best fit their personal style. The services are:
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Questions & Answers are short answers to commonly asked questions about HIV infection, treatments, and life with HIV.
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Instant Library includes full-text articles covering a broad range of topics drawn from scientific journals, newsletters, and the popular press.
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Getting Help/Support contains descriptions of approximately 300 relevant health services, ways to find a provider, and how to be an effective consumer.
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Referral Directory has descriptions and ways to contact a set of national services that offer information, support, and referrals of value on the health problem.
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Assessment asks questions about a person’s life style, assesses the risk, and offers specific advice on how he/she can reduce his/her risks.
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Decision Aid helps patients think through difficult decisions. Users learn about the options, clarify their values, the consequences of their actions, and the misconceptions they have.
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Action Plan helps users plan how to successfully implement decisions. They identify goals and resources, and learn how to overcome obstacles.
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Discussion Groups are facilitated online support groups allowing patients and families with similar problems to share information and support.
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Ask an Expert allows patients to write a question and receive confidential responses from experts. Experts can depersonalize the response and place it on Open Expert for other users to see.
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Personal Stories are real-life accounts of people with similar problems, living and coping with their illness.
Color, graphics, and simple user prompts make CHESS appealing and easy to use by people with no computer experience. Its contents are selected to respond to extensive studies of user needs. CHESS has been described in detail in several articles that document extensive use by people in various health crises.23, 24, 25, 26 For example, during the 13 weeks that the 107 HIV-infected individuals in the current study had CHESS in their homes, the average use of the system exceeded once a day, with heaviest use concentrating on communication services.23 Detailed analyses showed that women, minorities, and those with less education generally used CHESS as much and sometimes more than others in the study.24
This article reports on what we believe to be the first randomized controlled study examining the impact of an interactive, computerized personal health support system on quality-of-life and utilization of health care. Specifically, we hypothesized that HIV-infected individuals given access to CHESS would improve their quality-of-life and use health care services more efficiently than those in a control group.
Section snippets
Methods
Subjects were recruited through posters, newspaper advertisements, or during visits to AIDS service organizations or HIV clinics in southern Wisconsin. After reading and signing an informed consent document, potential subjects completed a pretest survey and mailed it to an independent third party, who (using tables of random digits) randomly assigned subjects either to receive CHESS or no intervention beyond standard medical treatment for HIV-infected people. These procedures were approved by
Results
Table 5 describes the experimental and control groups at pretest on a number of demographic characteristics. The sample was predominantly white, male, fairly well-educated, and in their late 20s or 30s. Experimental and control groups did not differ significantly (P > 0.2) on any of these characteristics.
Conclusion
In any disease where consumer behavior can impact health care outcomes and costs, full and effective participation by consumers is essential, but educating, empowering, and activating health care consumers has been remarkably difficult. This study suggests that computerized health support systems have the potential to combine the economies of wide-scale mediated dissemination of rare professional expertise with the depth and specificity of individual information-seeking, and add social support
Acknowledgements
This study was funded by grants from the W.K. Kellogg Foundation for the development of CHESS, and the Agency for Health Care Policy and Research for the evaluation of the HIV/AIDS module of CHESS. The authors wish to thank, for their significant contributions, all members of the CHESS project team, the HIV Clinic staffs at the University of Wisconsin Hospital and Clinics and the Milwaukee County Medical Complex, and the participants in this study.
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Currently, Associate Professor of Information Management (Chan), Yuan-Ze Institute of Technology, Taiwan.